This episode title is a bit misleading (sorry!) because Benny is actually marking 17 years with type 1! He's away at college and while I hope to talk to him for the show soon, we just couldn't swing it in time for his actual diaversary. To mark the date, we’re going to replay the first time I talked to Benny for this podcast – which I did along with my husband and my daughter back in 2016.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
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This is a longer episode, so I wanted to break it down a bit - and a full transcription is below.
00:00 2023 Stacey introduction, talks about Benny's 17th diaversary
03:55 2016 Stacey explains how the order of interviews and a few housekeeping notes
05:22 Slade
24:27 Lea
40:42 Slade (part 2)
1:12:15 Benny
1:26:07 2023 Stacey wraps it up
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Episode transcription below - our transcription service doesn't speak diabetes perfectly, so please excuse any mistakes. Thanks!
Stacey Simms 0:05
This is Diabetes Connections with Stacey Simms. This week is my son's 17th diversity 17 years with type one to mark what's really his entry into being a young adult with T1D. He's almost 19 We're going to take a look back at when he was a lot younger. We've got a replay of the first time I talked to Benny for this podcast back in 2016. It's a conversation that also includes my husband and my daughter. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Welcome to another week of the show. I'm your host, Stacey Simms. And you know, we aim to educate inspire about diabetes with a focus on people who use insulin. I am not great about remembering Benny's exact dye aversary. And most of the reason why is because his diagnosis was very, it was prolonged, I would say it really only took a week, maybe a week or a couple of days from the time that I called our pediatrician and said, I don't like what I'm seeing Something's really wrong to an actual in hospital diagnosis and, and all the education that goes with it. But we had so many bumps along the way. And I've told these stories before, you know, a fasting blood glucose. That was normal, it was 80. And that was on a Monday. And then some subsequent diagnoses of things that we now know were just symptoms, you know, infection, things like that, that they treated, and we thought, yeah, we got it. And then finally, the A1C results, which came back five days after that initial fasting blood glucose, which is when they sent us to the hospital, all of that to say I remember the days of the week, Monday was the pediatrician Saturday was the phone call to go to the hospital. But I never remember the actual dates. Social media memories usually remind me and sure thing they came up this morning. So I'm recording this on Benny's actual 17 year diver serie on December 2,
December also means and I need to tell you one quick thing about moms night out that the early bird special for Charlotte is over. I do have a promo code for you that you can use on the regular price to save $30 off. And that promo code is m n o 30. Mom's night out m and o 30. You'll save $30. With that I will put a link in the show notes. You can always go to diabetes dash connections.com. We have a mom's Night Out tab as well there now. If you go there we are announcing our next cities this week, I may have already done so. So follow on social for that announcement or click on over to the website, click on the mom's side out tab. See the new cities registration is not open for them. But you can sign up to be emailed directly when registration does open. And for more information.
All right. I am hoping to talk to Benny for a new episode soon. As you know he's away at college. And I cannot wait to get that kid home for winter break. As this episode goes live. I think he's coming home in about 10 days, not that I'm counting diabetes, while he's been away has been fine. But I've tried really hard not to ask him a lot of bout it other than once in a while like you're doing okay. Right? Because we don't follow his Dexcom anymore. And I really don't know much day to day. You know, he's reordered supplies with me. So I know he's he's doing that kind of stuff. I can't wait to talk to him more. I will let you know when we're going to be taking questions for that episode, we'll post to the Facebook group for that. These conversations you're about to hear were recorded in fall of 2016. Benny is in sixth grade, his voice hasn't even changed yet. Oh, my goodness, I left in the original introduction, which gives more context. But I also want you to know, this is a much longer discussion than I remember. So I'm going to do more comprehensive shownotes with some time codes, if you want to kind of jump around on this episode and pick and choose where you want to listen. So here we go. My family's thoughts on one decade. Remember, this is seven years ago with type one.
Stacey Simms 03:55
This part of the podcast is usually where I interview somebody else get them to share their story and their thoughts about living with diabetes. This is different. This is my family's story. And let me tell you, this is what I've done my entire career, talk to people interview people since before I even graduated from college. And these are the toughest interviews I've ever done. I was so nervous. But they were they were wonderful. And I was just thrilled that they agreed to even talk to me. My husband and my daughter are really not front and center. Attention people. I don't know how they live that way. But here's how it's going to go. You're going to first hear from me and my husband Slade. And then you'll hear from Leah. We're in the middle of that interview. I'm going to pause the conversation. And then you'll hear Leah's interview, because I had maybe the most Frank, honest and open conversation about our brothers diabetes that we've ever had. And then we'll wrap that up and you'll hear more from me and slay And then finally you'll hear from Benny. Oh my gosh, that kid, if you have a middle school boy, maybe you'll understand that conversation was, let's say it was interesting. There is a bit of overlap in these conversations as you'd expect. I mean, there are some events that we all talk about. So you'll hear about those things more than once, that sort of thing. Okay, here we go. I'm really interested to see what we talked about today because Slade doesn't really talk about Benny's diabetes publicly. I mean, of course, you you're very, very involved, and you talk about it, I'm sure with friends, and things like that. But it's not like you are front and center at functions. And, you know, that kind of thing over the years, I don't
Slade 5:41
have a podcast,
Stacey Simms 5:43
I could help you set one up. But I've been told in the past, I speak enough for everybody in the family. So I'm really interested to hear what you have to say if your conversation matches mine. Alright, so let's start 10 years ago, Ben, he was diagnosed with type one. He was not yet two years old. And Leo was just had just turned five. What I remember vividly is the month before he was diagnosed, when I was working at WB T, doing morning radio, you got the kids every morning. So you used to text me, like 730 or seven o'clock every morning and say, you know, kids are okay are off to daycare or you know, here's a funny picture. And you texted me one day and said you are not going to believe the amount of pee that came out of this kid. Do you remember that? Like the mattress is soaked in the floor was wet. I
Slade 6:35
remember one morning, getting him out of his crib, right? And the entire mattress was soaking wet. Like everything. All the blankets were wet. The pillow was where the entire mattress was. So it was I'm like it didn't make any sense to me.
Stacey Simms 6:53
Right. And you know me at work. I was kind of thinking when you trade off like we did because sleep had a restaurant for many years. So I had the kids in the afternoon and in the evening when he was working. And he had the kids every morning because I used to do a morning radio show that started at 5am. And I just remember thinking, not on my shift like you gotta fix
Slade 7:14
which I did right away. Of course, drying the mattress out trying to figure out what happened, but we
Stacey Simms 7:19
kind of thought it was a one off. Oh, yeah. Because it didn't happen again for a while. Yeah. And then it happened to get about three weeks later. Well,
Slade 7:25
we noticed I think from that point on over the next couple of weeks that he was drinking a tremendous amount of liquid for a 18 month old or 20 month old. It was you know, and he would suck down a little 10 ounce sippy cup in like, you know, 15 or 20 seconds. It was absurd.
Stacey Simms 7:45
So the the mattress wedding thing was in October, I think late October or something. And then of course, there was Halloween, which I'm sure didn't do him any favors. That was the year the kids dressed up. But it was the only matching costume we ever did. Leo was Ariel and Benny was flounder. And then, at Thanksgiving, we had family photos on the Friday of Thanksgiving that year. And then we went to the lazy five ranch. And I've told this story before one of my brothers was here, right brother David was there, right? And I posted that picture recently on Facebook of David and Benny with a giant glass of orange juice. And then we went to the lazy five ranch and of course Benny couldn't he was still in diapers and he was soaked and he was just laying down and he was exhausted. He felt like garbage. And then that Monday, we went to the pediatrician that Monday right after Thanksgiving, right? And
Slade 8:37
then I mean, I think they did a fasting glucose and a few other things. And they thought he had a urinary tract infection knew and I already had suspicions that it was something more like it didn't make any sense. Yeah. And then it was a few days into an antibiotic for what they thought was a urinary tract infection and there was no change. And so his outward symptoms continued to be the same right where he drank tremendous amounts of water and liquid and was always going to the bathroom.
Stacey Simms 9:08
Well on that Monday when we went to the doctor his as you said his fasting glucose was normal. It was 80. And then they did a blood draw. They must have found something in his urine, right? They must have found sugar in it because I remember they did a urine test to do a urine test on a kidney. They didn't
Slade 9:24
remember that we had to kind of push for them to do an A1C like they it took a week or so. Yeah,
Stacey Simms 9:30
but we didn't ask for A1C We just asked for a blood test. I didn't know what we were asking for did I remember holding you had to hold him down? Yes, I did have to hold them down Leah was in the hallway Leah remembers that remember some screaming?
Slade 9:40
It wasn't exactly pleasant.
Stacey Simms 9:44
Yeah, and then he did that they said I had a urinary tract infection. And I remember when we treated it he seemed to feel better once a day right just from the urinary because he did have one but you know job raucous or pediatrician friend down the street said to me Why would a healthy two year old boy have a urinary You're trying to keep keep looking. So I was convinced at this point that he was he had contracted a fatal disease. I was on the internet. I was looking at all sorts of horrible things. I thought he had kidney cancer. I really did. I was so scared. And then he seemed to feel better. And then on Saturday, they called us and David was still here. And they called us on Saturday and said, like it was an emergency get to the hospital. But they wouldn't. They didn't tell me why. Well, they did tell they thought they told me why because they told me his blood sugar was like, you know, 700, or the A1C correlated to, you know, I don't know what it was. But I remember thinking, He's fine. He looks fine. He's doing okay. Why do we have to rush to the hospital? But we did.
Slade 10:33
Yeah. But I remember during that week that we kind of, we were guessing that it might have been diabetes?
Stacey Simms 10:42
Oh, well, yeah. Because most people and you know, the symptoms matched perfectly. But I think it was the fasting glucose being kind of normal that threw me off. And I of course, went to worst case scenario,
Slade 10:51
you went, you definitely went deeper. But you know, still concern. Yeah. Not knowing. And it's, it's a scary thing, when the doctor calls and says, Take your kid to the emergency room. And you go while he's walking around playing with some toys, he's just fine. So and then, of course, it's just a, it's a crash course. Right? You get admitted in two days later, you're out and you have diabetes and have to live with it the rest of your lives.
Stacey Simms 11:19
Oh, you know, one thing I forgot is, when we took him to the pediatrician that first time on the Monday after Thanksgiving, when I called, we knew just enough to say he's got the symptoms of type one. We knew that much that the pain and the drinking, because of all the stuff I'd done with JDRF already and in Charlotte, and my pediatrician, Dr. Scott said, I've never seen it in anybody younger than two. Right, bring him in, and we'll rule it out. And thankfully, you know, they took us seriously because I've heard some nightmare stories of people that don't. But what's funny is, here we are 10 years later, almost every time I go to that pediatrician, and it's one of these big practices with like eight doctors, they all look at Benny's chart and we go in, they say, oh, like he was the youngest one we saw at that time, you know, and now of course, there's lots of kids that are diagnosed younger, unfortunately. But for that practice, it was it was unusual. It's pretty unique.
Slade 12:07
Yeah, I just I just distinctly remember that we had to push a little bit. Yeah. To get them to think in that direction.
Stacey Simms 12:15
Oh, when he walked in with AD, yeah, they tried to figure out something else. So
Slade 12:19
I mean, I think all that really says is, doesn't matter what the age or what you're thinking, you have to be your own advocate, you know, in some way, shape or form, if you're not your voice, then there's an opportunity to miss something. Right? Not get a good look at it. So I think that I think that not going down the you know, the rabbit hole right? To something considerably more catastrophic. And trying to rule that stuff out. You have to, you have to ask and you have to instruct and you have to, you know, your medical team, you have to be part of the conversation, right? You can't just tell me what to do.
Stacey Simms 13:04
But it's hard to in some ways, because you don't know what you don't know. But you're I agree with you. You have to we've learned this for many years. Now. You got to push you got to be your own advocate, you got to ask questions. But, you know, if I didn't know, peeing and drinking was a sign of type one, I don't think I would have known what to ask the doctor. Right. But
Slade 13:19
I also think that that I don't think doctors are offended by that. I think that that helps them do what they're trained to do is help. Help people get better. And if you're not engaged in the conversation, it's a one way street. Yeah. It
Stacey Simms 13:32
would help. Alright, so we're in the hospital now. And I remember he had those things. What are those things called all over you with a stick you the sticky things I had like an
Slade 13:41
EKG monitor, right, and he kept pulling
Stacey Simms 13:43
them off?
Slade 13:44
Yeah, that couldn't have felt good.
Stacey Simms 13:48
That was like when we first started using the Hulk analogy, because he was like the baby Hulk pulling everything off.
Slade 13:54
Well, it's interesting, and he doesn't have any idea what's going on.
Stacey Simms 13:57
But that night, we took turns, you know, you went home. I stayed. And they pretty much didn't tell us until the middle of the night that he had type one. They kind of I think everybody thought we knew. And finally I asked if they had a diagnosis. And they said, Yeah, he's got they would like yeah, he's got type 1 diabetes. I mean, they were nasty about it. But I think everybody thought someone else had told us along the way.
Slade 14:19
We didn't see Dr. Werner alto second day or the next day. Yes. We
Stacey Simms 14:23
went in on Saturday morning or Saturday, mid morning. We saw nurses and hospitalists there was that one horrible woman. She came in and she smelled. She didn't say anything to us, like not Hello, how are you? I'm so and so she came right in and smelled him. And now I know it was for fruity breath. Right? So when she came in, she smelled him. And you know, I am of course very calm. I said, What are you doing to my son? Who were you? She kind of explained but she kind of left us like you're not coming back and just I don't know what I said. I'm sure it was very nice. But yeah, that night we met the hospitalist. And that was when that was when he said to me, who stays home with Benny, not our endocrinologist, but but just a hospitalist, a doctor who sees people in hospital. And I was already panicking because I had my dream job. And I had health insurance. You had a restaurant you owned a restaurant is that like you can untangle from that pretty easily? You know, I'm closing the doors. When
Slade 15:21
we tried to untangle from it, it took a long time.
Stacey Simms 15:25
And I was terrified because it couldn't really quit. I wanted to quit my job. But I had to health insurance and I really didn't want to quit my job either. So we said who stays home with Benny? I said, nobody really nasty. And then I burst into tears. And you weren't there. And Vinnie, do not remember you were not there. He was another night. And then then he put his kidneys awake. He's 23 months old. He puts his arm around me. He says it's okay, Mommy. I was like, Dude, you better get your stuff together to myself. You bet this is your 10 year old is comforting you this is not how it's supposed to work. And that was a big turning point for me. And like the guy was great. He said, I'm sorry. He said, What I should have said is what's your situation? He's like, I'm just trying to help you acclimate? And he told us even go back to daycare. And he you know, nobody said no to us. They'll try to help us figure out how to make it work. But that moment was a big turning point for me.
Slade 16:14
I don't think I had any big turning points. I mean, the only thing that I realized was, you know, when we finally did come home, and you know, I went grocery shopping.
Stacey Simms 16:26
Oh my god, wait. So hold on. Let's get there. So we met Dr. V. The next morning on a Sunday. And he came in and I remember him coming in and saying hi to us and being great. But getting right on the floor with Benny. Yeah,
Slade 16:39
and what I remember. And and you have a better memory than I do. But what I remember is him saying listen, based on where we are today with treating this. There isn't any reason he shouldn't have the exact same life he would have without diabetes that he has with diabetes. I mean, that was that was that just set the tone? Right?
Stacey Simms 17:00
Yeah, it really did. And I remember, thank you. I will anyway, I remember, like my first questions to him, because what do you know about diabetes? Right? You know, type two, I remember thinking and asking him like, do I have to cut his toenails differently? Like? He was like, Oh, I could see, right? Yeah, take a deep breath. And like, this lady is gonna be fun. But he got right on the floor and met Benny and I don't think he had kids at that point. He did not. Yeah. And he was terrific. But I interviewed him. I said to him, you know, I'm glad to meet you. But you know, I don't know anything about endocrinology, or endocrinologist, or endocrinologist in this town. Right? Of course, I want to make sure that my child has the best. So I asked him a million questions. And he was great. He was really great. Yeah,
Slade 17:49
I just think he set the tone that said, hey, what you're going to deal with is lifelong. And then that's the way it is. But it's not life threatening. Yeah. Doesn't have to be life threatening, right?
Stacey Simms 18:03
He didn't he didn't come in and tell us a cure is around the corner. He talked a little bit about the artificial pancreas. I remember because I asked him about technology. He he did say that they were one of the first practices in the country that routinely gave pumps to toddlers, because this was 2006. So that wasn't happening all over the place that he thought that Benny we know down the road, we would talk about that. But he was not overly he didn't promise anything.
Slade 18:30
No, actually he did. He promised us Benny would have a normal life if he took care of himself. Right? Well, that's true. It didn't make that that's
Stacey Simms 18:36
true. And that was very reassuring. And he has been consistent in these 10 years. He said, The three things that he says at almost every appointment, I'm pretty sure he told us then, which was he wants to make sure that he can live a long, healthy life he's supposed to, that he has, he feels good, and can enjoy life right now. And that we find a way to make diabetes fit into what he wants to do, and not the other way around. And we've been able to do that pretty much. It's not you know, when people say, Oh, diabetes can't stop you. I mean, some of that I, you know, I shake my head a little bit or I raise an eyebrow because, you know, obviously diabetes definitely can slow you down. And there are days when it can stop you. That's okay. I mean, you know, when you break your leg, it's gonna stop you. You know, I you know, it's I know, it's a mindset more than a truism. But, you know, I think we've had a pretty realistic look at it. Yeah, I
Slade 19:27
think you as you go through, particularly growing up, and there's, you know, there's minefields everywhere, right? It's just one more minefield, right? I mean, it's something else, you have to navigate it and it gets added into your routine added into the way that you think. And it's, yeah, it's a it's a burden because it's different than what a lot of your peers have to deal with. Is it a burden in it in that it can be a roadblock to accomplishing something you want to accomplish? like you and I think that way, I don't think that's true.
Stacey Simms 20:02
We try not do not it's not a not a dead end road, you can make it that way. Well, it can be a roadblock that you can overcome, right. But it shouldn't stop you in your tracks.
Slade 20:11
You can do a lot of what was me? Well, yeah, well, that's different, right? You can do a lot of what was me, but there isn't. There's a, there's a roadmap to accomplishing what you want to accomplish with diabetes. All
Stacey Simms 20:24
right. Speaking of routine, let's talk about that grocery store.
Slade 20:28
That was hysterical. So, you know, of course, you know, when you talk about diabetes, you talk about carbs, right. And as you load your body up with carbohydrates, you need insulin,
Stacey Simms 20:38
oh, and I should add, we were put on a carb counting regime or a carb counting routine. Immediately. We didn't do any eat to the insulin, it was all give them as many shots as you want, right? And count carbs and dose him that way. Right. I mean, obviously, at first, we tried not to give him a lot of injections. But we were some people go on different routines at first, right? We weren't, we were all carb counting from the beginning,
Slade 21:00
right? But it's really all about, you know, the basics of understanding how to take care of yourself is you have to know what you ingest, right? You have to know what you eat. And you can give yourself insulin to help your body, right, continue to move forward and act the way it should act right by adding an insulin. So we're like, you know, maybe we should really go low carb or no carb. So I went to the grocery store, I think I spent two and a
Stacey Simms 21:30
half hours. That's what I was gonna say. It was definitely two hours. And
Slade 21:34
I it's I think I know the label of every item in the grocery. But I just went and bought everything that was low carb when he came home and put it in the cupboards and put in the refrigerator and he loved some of the food and fed it to him for a few days and then realized we were feeding him fat. Yeah,
Stacey Simms 21:50
we did two weeks almost of Atkins, basically. And I lost about six pounds. It was, I'm sure that had nothing to do with being crazy. But yeah, I mean, we went from eating, moderate. Everything in moderation and pretty healthy. I mean, our kids were five and not an almost two. It's not like they were drinking soda and McDonald's all the time. But we were eating things like oatmeal for breakfast and pancakes and stuff. And we went to eating sausage. And I don't it was ridiculous. Like everything
Slade 22:19
was a lot of me. Yeah, it was a lot of meat and a lot of cheese. And we realized is we're just gonna, we're just eating fat, and we're gonna kill him. So after a couple of weeks, I actually threw a bunch of that stuff out. But
Stacey Simms 22:29
the turning point for me or the final straw was when you were like, how about pork rinds? That's a good snack. He's doing we're Jewish. I mean, we don't keep kosher, but I don't remember. I was like, that's, I know, many people enjoy pork rinds. I'm not. I don't, I bet he would love them. Now. You can find some things, I mean, olives, beef jerky,
Slade 22:56
just remember kind of throwing it out and go, that's it, we're just going to, I'm going to feed him the way we would normally feed him. And, and we will treat him medically the way that we are given the tools to do it. And that's what we're gonna do.
Stacey Simms 23:08
And we also counted every carb tried to do it exactly. I think it's I think the whole thing, we figured it out two hours of routine to our day, because we had a yellow legal pad, right, we wrote everything down. We've got all the food, the dosage, the routine, but we were counting carbs, and ketchup, and green peas. And I mean everything because that's what we were told to do. Right. And I remember going for a follow up, when you go for free first followed two months later, one month later, and there was a mom and dad was like, really? This is excellent. But you do not need to do with the two cards that are in the ketchup. Well,
Slade 23:40
I still think actually, that's kind of important, because you need to understand that it's out there. You need, I mean, their cards, you're ingesting
Stacey Simms 23:47
what we need, and we needed to do it then to learn. Yeah.
Slade 23:49
And that's what happens is you learn you know, kind of what carbs are, where they are, where they're hidden, how your body reacts to them, particularly how Benny's body reacts to them. And then it's really kind of an art at that point, right? It's not really a science. I mean, there's all kinds of ratios and logarithms and all that stuff. But it really comes down to everyone's body is a little different. And it's it's much more like juggling right than it is like anything else.
Stacey Simms 24:27
I'm gonna pause my talk with Slade here and bring in our daughter Leah. She's three years older than Benny four years ahead in school because of where their birthdays fall. And about 40 years older in maturity right now, you know, it's okay to say that I was so happy she agreed to talk to me about this. And this might be the best discussion we've had about her brother and diabetes. I will say I remember a few things a little differently. But this is her story. Alright, so let's start at the very beginning. I when I talked to dad, we talked about when Benny was first day He noticed and one of the things that I brought up was when we had to take the first blood draw. You were outside of the doctor's office. Do you remember that? No,
Lea 25:08
I remember the electrodes, but and him always pulling them off. But I don't remember the blood draw. We
Stacey Simms 25:13
because you went to the pediatricians office with us. And he was screaming his head off, and you were in the hallway. Because you were just you just turned 508.
Lea 25:21
I think I do. Remember I was playing with my LeapFrog. And I was sitting in the hallway. And I was like, I would hear screaming, but I'd be like, Oh, it's whatever. It's fine. I'm gonna play my game.
Stacey Simms 25:33
And then we went when Benny was in the hospital. You remember the electrodes and Uncle David was with that
Lea 25:38
was funny. I mean, because I didn't understand what was going on. So it was funny, because he had electrodes all over him. And he would just like, pull them off. So they couldn't do anything. And I mean, he was crying and like, you were very frustrated. And I'm just laughing because I had no idea what was going on.
Stacey Simms 25:52
And then the next day, we actually went ice skating. It was our community ice skating thing with when we were making the temple. It was like our first time though, into the ice skating rink.
Lea 26:01
Did the rabbi go,
Stacey Simms 26:03
I don't think they had the rabbi yet. It was just us. And you were very little. Okay, so you remember, okay, so what do you do you remember, like, what kind of things you remember from when you were little.
Lea 26:14
I remember very general stuff. I don't really remember like specific instances. Like when he was first diagnosed, I didn't think anything was wrong. But apparently he was like, drinking too much and peeing too much. And I was just like, Yeah, whatever. Because I was not the biggest fan of my little brother. And I remember, as he got older, and I think it was more, I was less of like a small child and more of like, preteen, I was very upset because he'd always get so much attention, which now it's like, you get it, because it's an awful horrible thing and all blah, he needs all this stuff. But as as a small child, it was like, pay attention to me, Mother, I exist to you have a second child who was actually your first child. But you know, it was cool. I was an only child for four years, which was a wonderful thing.
Stacey Simms 27:03
It was like, almost three years. Before, it was three
Lea 27:07
years. Like for almost four.
Stacey Simms 27:10
It was almost three, it was three U turn three, November, whatever. And then he was boring. Okay, very similar. But I remember a lot of when you were very little as you were a big helper. Like when he was first born, you would help me with the help with the baby, you would help with diapers, you would read to him every night, you know, to get sick of him all that stuff. And the same thing with diabetes. You wanted to learn how to do everything. You guys would give shots to the stuffed animals.
Lea 27:35
Oh, yeah. The Little Bear and there were like little patches on it. Yeah. That's Rufus the bear with diabetes. Oh, that's fun.
Stacey Simms 27:44
That's nice. And right. So you would do that. But you were very helpful to me in the backseat of the car. Because when you have a kid in a baby seat, basically, right, he was in front facing. I don't remember what the requirements were now. But like, you'd have the three point harness the five point harness those kinds of chairs. And so you were next to him? And if he was low, you you actually checked him once or twice for me when you were like five or six years old. You did? And then yes, and then you but not often, but you were very responsible. And you were like I'll do and usually I would pull over if I needed to like if dad wasn't mad. That's I mean, it wasn't making you do it. But you did it once or twice. But you were always willing and helping me the juice boxes and stuff like that. So much
Lea 28:23
has changed.
Stacey Simms 28:27
But then as you got older, like you said, it became more of a why? Why him? Why are you giving all the attention kind of thing?
Lea 28:34
Because I never, I mean, until now I never really fully understood what, like, why he got so much of the attention. It was always just like, you spent so much time like talking to him talking about him, like calling people about it. And just you had all this you had like Lantis and Hume along, whatever all that stuff is just words that I hear around the house. But you had all of these packages shipped, like every couple of months or like, whatever you would go to these conventions and the walks and it was just like, well, let me do my walk, Dude, where's the layup walk?
Stacey Simms 29:09
Do you think we should have done a better job educating you about diabetes? Because I feel like we did tell you it's
Lea 29:14
not that I wasn't. It's not that I didn't really understand what it was it was just that like, I was a child. And I still am a child, but it's like, pay attention to me pay attention to me. It wasn't that I didn't know that it was some awful thing that he like needed to have all this attention because I knew that it was just like, why can't I also have attention? It wasn't like I was trying to take it away from him. It was just like me to say him.
Stacey Simms 29:37
What would your advice be to parents listening to this who have a kid with type one and other kids who don't in the family?
Lea 29:43
Well, you certainly don't have to. You shouldn't like take attention away from a child with diabetes just because one of your other children is feeling a little like left out but that doesn't mean that you can be you can totally ignore that child because they're still like They're your child. They're there, they need you. But it's, I think it would be better if you if someone explained to me that, like, if you'd like sat me down, and with Benny, and been like, this is what's happening, blah, blah, blah. This is why we give them so much attention. It's not that we don't love you. And just something like that. And sure, I probably still want to complain, but whatever. Like, it's fine.
Stacey Simms 30:23
So like, the little things that we tried to do, like weekends away, or just you and me stuff like that, like spending,
Lea 30:29
spending a weekend with my dad or with my mom, like, that's great. Because it's, it shows like, sure you spend basically every second of every day worrying about this other kid. But you still have time for me, which is pretty awesome.
Stacey Simms 30:43
So tell me about camp a little bit, because this is something that you and Benny share that you do not really share with me and your dad. You I don't know if you remember, but used to come home from camp. This is the regular summer camp slip away for about a month. And tell Benny, it's gonna be so great. You're gonna love it, you know, can't wait. So you would go and I would always think there's no way. There's no way and you were ready to go when you were eight. And when he was eight, I was not ready for him to go. But we sent him anyway. What? Do you remember why you want them to go? Did you just think he would have fun?
Lea 31:14
Well, I mean, when he first went, what unit like, well, how old was I? When he first went?
Stacey Simms 31:21
Well, he was bony one. So you would have been three years older than that. I don't know how we can never keep track of those things. Well, he
Lea 31:26
was like eight when he when he was eight. So I would have been like 11. Yeah. So at 11 It was still very much like it will because because of the fact that he's had diabetes, and we've known for so long. It's just kind of part of our lives. And I don't think of it as like this huge deal. Like it's just something that he just has to deal with him. It's like whatever, because he's a normal kid. It's not like, it's not like some other things that people can get where like you see, like, what you see the symptoms or you see, like the damage that it does, it's just sort of something that you have to deal with. And it's just like, whatever. So, I mean, it never even occurred to me that like he wouldn't go to a sleepaway camp, because that was just like, oh, yeah, it's like, Andy has diabetes. It's like, he's got brown eyes. He's got diabetes, like whatever. So, I mean, it was it was just, like, such a fun place to like to go and to get away. And it was, like, you get to do so much there that you don't really get to do at home. And it was never, it was never about him. Like, oh my gosh, he's my brother. I love him so much. I want to come to camp. It was like, I want you to experience this wonderful place. But it was it was never, it was never about the diabetes. It was just about him wanting to like go,
Stacey Simms 32:37
I don't think he ever would have gone if you hadn't been so excited about it. Because that was part of the reason I wanted him to go because you liked it so much. That was wonderful. Yeah, he's really has a good time there. I mean, I'm so glad you had such a great experience to
Lea 32:50
take my place. Okay,
Stacey Simms 32:52
okay. All right. So that was great. I can't
Unknown Speaker 32:55
go anymore. Yeah,
Stacey Simms 32:56
you're too old for camp. Now. That stinks. No,
Lea 32:59
but I can go back this summer if I wanted to. Next summer next summer. Yeah, but I don't think I would I might be counselor, be counseling
Stacey Simms 33:06
keep your brother in line on the different side of the camp. Okay. Has since since Benny was diagnosed, I know you've met other kids with type one. But you don't come to conferences much. So it's not like this is a hey, it's a type one atmosphere, you know, other than the walks and things? Do you feel that? First of all, have you ever talked with someone and I haven't really been asked this question. But like, do you feel like knowing about Benny's diabetes has maybe helped you get to know other kids with type one better?
Lea 33:38
Not really, I mean, most of the people that I talk to, like kids my age, or adults or kids Benny's age, it's always, like, that's just sort of a thing that we both know about them that they have diabetes. And it's we don't, I mean, the most that we would ever talk about is like if they were low, or if like they had to bolus for something, and it would never be like a big deal. And most of the time, we would just talk about like, other things, just because, I mean, for me, I'm just so used to my brother having it. And for them, they have it, so they just kind of have to be used to it. So neither was ever make a big deal out of it. And it's just kind of like whatever,
Stacey Simms 34:11
it would be kind of weird. For teenagers, you'd be like, so tell me about your type 1 diabetes.
Lea 34:18
You wouldn't. I mean, you can certainly have a conversation with somebody else about it if you don't have it yourself. But I mean, unless you're like you're very new to what diabetes is. It's generally not a big deal. Like if you're talking to somebody who has diabetes, you generally know they have diabetes, and that's why you're talking to each other. So it's never really like a major point of discussion. If that makes any sense. Got it. Did
Stacey Simms 34:47
you ever have a moment where you were scared with Benny?
Lea 34:51
There was I was like, it was like five minutes where you first showed me an epi pen like in case he got like really low. Oh, the glucagon, glucagon. It's an epi pen.
Stacey Simms 35:05
But it's okay. But it looks like the same thing.
Lea 35:07
It does the same thing. And I remember like you came up and you showed me and it was like, this big red needle or whatever. I'd never seen anything like it. And you're and you explain the whole thing to me. Like if Benny gets really low, or this happens, or if he passes out, you have to stab him in the thigh with this giant needle. Like, if nobody else was around, you have to do it, or he's gonna die. How old was like nine, five?
Stacey Simms 35:30
No, I don't think I'm kidding. I don't remember how
Lea 35:35
it was before I turned 10. I remember this. And I was just like, What on earth is this? You want me to stab my brother? If he's like lying on the ground? But and you're like, keeping it in the cabinet downstairs? And it's like, what is this? But I mean, other than that, it's pretty much been totally normal. And
Stacey Simms 35:52
it's funny because some of our babysitter's we found because of diabetes, and you've learned to be really good friends with them, which is pretty cool as you've gotten older. Yeah. But
Lea 36:01
it was never because of their diabetes. It was just like, oh, you know how to take care of yourself. You can take care of our child. Well, it
Stacey Simms 36:07
was for us it was for you had nothing to do with it. What do you care if they had diabetes, it was just one of those things that we felt, we just fell into these great, we found great people. And, you know, like our neighbor, Christina, who was diagnosed as a young adult, and now she's family friends, which is really nice. She's pretty awesome. She is pretty. So family is pretty awesome. Do you worry about Ben growing up with diabetes or being an adult with diabetes? Now? Have you ever even thought about it? Um,
Lea 36:29
I'm not worried for him. Not, not with him being able to take care of himself because he's totally capable. I'm just worried about like, what other people might say about it. Because when, because, people when you hear diabetes, you think of like, generally what people think of diabetes I think of as normally type two, which you can get, which is like, generally related to like obesity, or just being overweight and not healthy. But he has type one, which is totally different. And I just, I don't know, kids are mean. I mean, really, kids are kids are mean. And I don't know, I'm not worried about him. I'm worried about everybody else.
Stacey Simms 37:06
In what they're gonna say that you'll beat them up if they're meeting of course. Alright, let me just make sure before we start, people had questions. I think they were mostly for Benny, but somebody did so offended. Will do me a question. It gets all the attention. I
Lea 37:21
know. Isn't it? Great? Let's see if all this it's okay to complain about your sibling getting all the attention. I think that's a great point.
Stacey Simms 37:30
Definitely. It's okay to complain better than season.
Lea 37:34
See thing. Don't hate your parents. They're just trying to keep your other sibling alive. Oh,
Stacey Simms 37:40
this was an asked these questions. I would love your daughter's perspective. Did it cause her to be jealous? attention seeking, seeking? And how does it feel to have to worry about him? Or do you worry about him? Well,
Lea 37:52
I'm gonna go with the second part of this because I feel like I've already addressed like the first part of this question, but I don't really worry about him. Like at all. It's always I know, you and dad worry about him all the time. Because it's like, what if he's not bolusing? What if he's really high? Like what's going on? But I'm just like, whatever, you can take care of himself. You won't let him die. It's okay. There's a hospital down the road, he'll be fine. I mean, I probably should worry just a little bit more than I do. But it's just, it's part of my life. It's part of his life. It's just, it's something we have to do. Well, I
Stacey Simms 38:23
think what we tried to do was to make you aware, but not to make it your responsibility. I just never felt like it was your responsibility as a kid, everybody. And if you remember when he got on the bus, he was in kindergarten. So you were in fourth grade. And people a lot of people said to me, Oh, well, it's what a relief that he's on the bus because even though you can't be with him, Leah's there and she can take care of. And I never felt what I told you at the time was, you don't have to worry about his diabetes, just take care of him as a sister and brothers should take care of each other. We told him that to like, if somebody's picking on you, he needs to stand up for you. And vice versa. If you get sick, he needs to holler for help. You know, it's just that kind of stuff. It was never diabetes specific. And I know you guys looked out for each other all the time, or didn't you sit next to each other all through elementary school?
Lea 39:08
No, for one grade,
Stacey Simms 39:09
I think Did you really say that? I was kidding. No,
Lea 39:11
I think it was no, I remember because I was in like fourth grade. So I was I was like, slowly like into like the cool part and like the back of the bus. And I was really excited about it. Because like me and all my friends. We sent like the ferry back and it was like, Oh my gosh, we're so cool. We sent back the bus. But the bus driver, it was Ben he was in like second grade or like, I
Stacey Simms 39:30
don't know, I remember this. This was in kindergarten. We foster going to school to major sit together.
Lea 39:34
He sat in the very front row, right? They were terrified right behind the bus driver because they were like, what if he like passes out? What if he goes totally insane where he doesn't have any food. And so they made me sit with him? Because I was at SR and like, I knew that they were olders I knew it was going on and I could like call like my mom because I knew your phone number. And I was very I was very upset. But you did
Stacey Simms 39:56
that for like a week or yeah, I've been told Does Yeah, there was no, yeah. And then you were like, Mom, we need to address
Lea 40:04
this. We have an issue. That's
Stacey Simms 40:06
great. I forgot all about that. And he was happy to see you go to Yeah, we
Lea 40:10
were both like, Go away. Get away from because my brother like he couldn't talk to females on the bus because they're like, why is your sister with you are like really awkward because like, he was like in kindergarten and I was like a cool fourth grader, not really. And so, and I was just upset because I was like, I want to go sit with my friends. Now. I don't want to do my little brother like ill.
Stacey Simms 40:30
And on that note, thank you so much, sweetie. This was great. No problem. You're listening to Diabetes Connections with Stacey Simms. I am so proud of her. Even though I was biting my tongue a bit. I mean, we explained diabetes a lot with her. I am sure you know that, you know. And yes, she knows an epi pen and glucagon are not the same thing. But wow. That was that was nice for me. That was really great to talk to Leah. All right, let's go back to me and Slade. And when we left off, we were started to talk about how we try to make diabetes fit into our life, rather than making life revolve around diabetes. Before before we left the hospital, though. We had a long planned event with our congregation. That that year that summer, we had also decided to help start our temple, right. That was that summer and then this this winter, this happened. But we had a an ice skating. I had planned an ice skating event in downtown Charlotte for the Sunday the day after Benny was diagnosed. So we were still in the hospital. And we talked about it and you said you should go right. And I didn't take Leah. And so you went to the hospital that day, we traded off. And I took Leah to the ice skating rink and I was really nervous. And I was really kind of upset about leaving him in the hospital. I'm so glad I did that. I'm so glad I did that. Because it showed her that life goes on. It kind of convinced me that life goes on. It was a great fun event. And our friends and our community were amazing. They were just amazing. It was so supportive of me. And they made sure we had fun. It was great. I'm so glad we did that. That was cool.
Slade 42:17
Yeah, I think that kind of sets or maybe not on purpose, but kind of set the tone for how are you we're trying to normalize we we work really hard and normalizing our lives. In fact, we live our lives first and treat diabetes second, almost, right, because it's just part of what you have to do. It's kind of like you have to put your shoes on if you're gonna go outside, right. So you have to treat your diabetes when whenever you're out and about so. But I think that kind of set the tone for it, right? I mean, because you can you can get into a dark place if you don't.
Stacey Simms 42:50
Well, and Dr. Dr. V. also told us probably that day, or the next day, don't buy him a pony for checking his blood sugar. Right. Don't reward him unduly because this is not going away. Yeah, it's not like, you know, oh, boy, I
Slade 43:04
think you started looking at ponies
Stacey Simms 43:06
I would have looked at I was looking at Porsches looking at everything. It's really funny. You know, it's it's interesting to when you talk about life goes on. I think we put him back in daycare, right? Three days later?
Slade 43:19
Well, we're very fortunate. Was it three days high? It
Stacey Simms 43:22
was very soon, probably within a week. And we were lucky.
Slade 43:25
But we were very fortunate in that the people who are the managers at the daycare center, had had some experience, and then took it upon themselves to go and get more training. Yeah, it was crazy. So we were really fortunate, but that that wasn't common than it was only 10 years ago isn't common, but it's very common now. So I think the challenges that people have about daycare are they're much easier barriers now than when, even just 10 years ago.
Stacey Simms 43:56
I would say that there are more resources to help. But I think that daycare is a huge challenge for a lot of people. I don't know how lucky we were.
Slade 44:06
Well, no, I don't disagree that it's a huge challenge. But it's there are more and more kids that are diagnosed that come through the doors at daycare centers, and they are their experience level is much higher than it was 10 years.
Stacey Simms 44:19
Well, what happened with us was there was a family right before us with a little girl and the mom was a teacher and a nurse. It was crazy. So she had made a whole guide book for them and came in and trained a few people. And so when we brought Benny they knew more than we did I wanted him to sleep there. I kind of did no no. And and Rebecca who was the manager who really just became part of the family for a while. And one or two of the teachers, as you said they did more training. I sent them to one of the JDRF training days and they learned along with us they were absolutely amazing. Then that little girl moved just like three days after we came back from the hospital so they weren't even there. And then the other thing I remember, I should probably stay chronological but I'll skip ahead We had a planned trip with my friends, my college roommate with Beth and Dave, to Las Vegas in.
Slade 45:06
But you know, back to the daycare thing, I think the key, the key to that is, and it's kind of the way we've always dealt with it is, our objective is when we put our son in the care of somebody else, particularly early on, our objective was to make them feel as comfortable and as confident as possible, that they that they could take care of them there or, you know, we didn't put pressure on them to say, you know, you were worried you're not going to be able to, or we were scared parents, we let them know that, you know, it's if you have to dial 911, you dial 911, it's okay, you do the best that you can with the tools that we're giving you and the tools that you have. And I think that that's, that's a hard hurdle for people to get over. But I think if you get over that, you get a lot more help. Right, and you get a lot more people who, when they're when your child is in their care that they feel confident, we all know that feeling confident, no matter what you're doing, helps you perform better. So we really worked hard at trying to instill confidence in the people that were at times across the years taking care of our son.
Stacey Simms 46:16
I think we were also the beneficiaries in a weird way of less or no social media. You're not on Facebook a ton, and you're not in all these diabetes groups. But I think if if I had been when Benny was diagnosed, my outlook might be different. Because some of them have 1000s and 1000s of people in them and everybody's experience is different. And you know, it is on Facebook, you only see the best and the worst. And people post a lot of nightmare stories that other people assume are the norm, and they're not. And I think I would have been more frightened, I would have loved the support. I mean, we had nobody up here for the first couple years. We didn't know anybody. But I think that that that has added to I don't want to do a whole thing on social media here. But I think that has added to some of the fear was,
Slade 47:01
I think that and because social media wasn't as prevalent as it isn't, it's the same thing, right? You believe half of what you hear and less than what you read, right? I mean, it's you have to make decisions based on your own experiences. And it's okay to view other experiences and see how they might, might influence what you're doing. But you can't, you can't say it happened to that person. So it's going to happen to me. Exactly.
Stacey Simms 47:26
And I will say he was great. I mean, he had highs, he had lows, he was always safe and happy, which as you know, if you listen, that's my goal is not perfect, but safe and happy. And the one time he went to the hospital was Was he he just got his thumb caught in the door. You remember he did
Slade 47:41
the same thing that other people do at daycare, they get hurt falling down, you know, somebody threw a block at his head, right? I mean, that's the same kind of stuff. And you
Stacey Simms 47:51
needed stitches. That was the one thing. And I was so nervous, because that wasn't too long after diagnosis, maybe a couple months, and I'm still nervous, because my oh my gosh, how are we gonna manage diabetes? Fine. It
Slade 48:01
was fine. It was easy.
Stacey Simms 48:02
It was easy. So the next big thing that happened in terms of life goes on was we went to Las Vegas with my college roommate. And I called my mom because she was going to come watch the kids and my parents lived in Florida. And I said, you know, I don't know if we should do this, you know, should we stay? And life goes on. You have to go you have to go. She said, You know, this is not you know, I'll do it. I'll do it. So as we started talking about she said, but I can't give them a shot. I got it. And you know what? I think she would have if she had to she would have right? Yeah. But we were very fortunate one of the girls from daycare, who was as she was trained to be a nurse, right? She was nursing student, Kristen. She was so she came over. I met her she stayed here. But she came over and did all the insulin at the weekend. And you know and mom called us a ton we were in was the Aladdin was it? It was it was the end of the Aladdin right? Because they
Slade 48:59
Yeah, it wasn't. Oh, yeah, it was yeah, they return it they were tearing
Stacey Simms 49:03
down around us. And so I remember distinctly like taking a call from her getting in the elevator on the Aladdin and losing the call. And then she called me back. So when we when we mean it, but we had a great time.
Slade 49:15
Was that before the show we went to what show the show when Dave
Stacey Simms 49:19
No, that was that was months after the show was the following weekend. It's what you tell us. Okay, so when you tell I'll tell the story. So one week after diagnosis. We're so fortunate. My brother in law David Slate's brother says four older brothers. And David is closest in age to him. So David was staying us for like a month after Thanksgiving. It was great. He was in between jobs. And he's just so close to my kids. It was wonderful. Unfortunately for him, he was here for diagnosis. So we had tickets to spam a lot. Me and you that following weekend. So again, David's like go go I've got it. I mean, David knew just as much as we did at that point. Yeah. So we get three numbers into spam a lot. I mean to know if it was that lady of the Like, I don't know where that is, or maybe I made it up. And, you know, in the phone rings, so you go out to take the call and like 15 minutes later yeah, it wasn't because I saw three numbers I think you saw like, and I went out to see what was going on. And he thought, you know, when you think about how you dose a little kid, he was 27 pounds. He was 23 months old, and he got like little puffs of insulin. But we were using syringes, right? So he would get like a quarter of a unit or you tried to estimate a half a unit and I think he was supposed to get a half a unit and David gave him six units or something like that. Or two, you couldn't have taken two units. I mean, he had this tiny little dose and David thought he gave him four times as much right? So we couldn't figure it out. So we just said forget it. We went home. As I remember
Slade 50:43
on our way home. We were driving home and he had it under we never stopped him. Did we? Yes, of course. We
Stacey Simms 50:49
came home. Okay, we we didn't come home. I thought we went right to the NATs house. Okay, so he's but But what happened? Is we checked or he checked. Isn't that funny? I can't remember either. We're getting old honey. So he checked or we checked and his blood sugar never felt right. He was perfectly fine. He was like, I'll make it up. He was like 150 all night. I mean, never fell. So he couldn't have possibly either do injection? Or he never miscalculated, right? Or, or Benny snuck a pizza in the middle of the night that we didn't know about. And so we were on our way home, right. And a friend of ours had had a holiday party going on that night. We're like, I will just go there
Slade 51:22
just fine. So the we left the show early, right. I mean, we're 20 minutes into the show. We laughed. We're driving home talking back and forth with David and realized he was fine. So we kept going went by the house and went to a friend's holiday party.
Stacey Simms 51:35
We're terrible parents. No, we're not. I don't think we're gonna terrible parents either. That's really funny. Yeah, and that we never saw spam a lot. No, I still haven't seen it.
Slade 51:48
I mean, I want to I don't know if I could bring Benny
Stacey Simms 51:55
All right, um, I promise we won't go year by year, day by day through the 10 years. But just a couple of quick things about the Look at me. Like, are you sure?
Slade 52:06
I don't have a good enough memory to do that, please.
Stacey Simms 52:10
Benny, God has insulin pump. We talked about that with Dr. V. Right from the beginning. And he got his pump. We went to our educator to Lynette Right. And, and we said, I remember saying give me the one that's easiest for me to use, and will be the best for him. Because I was really scared of how complicated it was gonna be. And we wound up with the atom is 2020, which is what they had back then. And I showed it to Benny, and he threw it across the room. Got
Slade 52:40
your hand and chucked it.
Stacey Simms 52:44
Maybe this won't work out so well. But he was two and a half. You know, we kind of explained to him what the deal was. And you know, this will be a big shot every three days. But not all the shots in between that by this point. He didn't care. You could give him a shot.
Slade 52:55
He would just stick his arm up like shot, he raised his arm you give me I put his arm down. He
Stacey Simms 52:59
didn't care at all. At that point. He was so so good. And so used to it. But that night when he had the pump, because we had the sailing trial for a couple of days, he said, I said do you want it? I didn't know he was gonna sleep in. So I kind of said, Do you want me to take it off? And he said no mine. And that was it. He loved it. He's just he wouldn't give it up after that. So that was really good. And we had a little trouble with the very first inset we ever did. We had a capillary, there's a lot of blood member and then we weren't sure it was going to work. And we like geniuses, we decided we were going to go away to start the pump. So we went to my parents house where this was in the summer. So you I went to my parents house for a week, because when you start an insulin pump, and they probably still do this now you have to check every three hours around the clock for the first couple days to get the level, you know, close to right. I'll go with, I'll stay with my mom. My parents spent the summers in New York at that point. I'll spend the summers spend the week in New York. And then my mom can spot me with the kids. It'll be great. I'll sleep when I sleep. And you had a golf tournament with Bill in Vermont, in Vermont. And I said, Oh go I can do this. Go ahead. And you know, I'm fine. I'll be with my parents. So I remember thinking when we first had that bad inset, this isn't I'm never gonna get on a plane. This is not working. And I remember we changed it and he was, you know, we've checked in right before we got in the car to go to the airport. And luckily it was fine. So I was much calmer. We were crazy to do this
Slade 54:20
as well. And I remember I was in Vermont and I don't know if I think I was supposed to pack up the diabetes supplies.
Stacey Simms 54:29
I don't know. That guy was yes, you packed all the diabetes supplies and I for the record. Slade is fastidious, he is an excellent Packer. Usually what happens is I put out clothing and then you pack it. Yeah, I mean, he's really, I would trust him more than myself in terms of remembering things. So I'll give you that much credit. Yeah, well, you blew this one. Oh, I forgot to add
Slade 54:51
the cartridges that you refill and then put back in the pump. And I'm in Vermont and you we're scrambling, we're on the phone, you're scrambling trying to figure out what to do. And Bill had a good friend whose son had type one. And he was on a pump. We had no idea if it was the same. But like, he calls them at like eight o'clock at night, we go to his house, he gives us a couple of cartridges. I mean, it was really, and we were ready to drive back to Manhattan, right? Or back to New York, to bring it to you. And you guys had figured out another way to Yeah,
Stacey Simms 55:27
but it was really funny. Because again, before Facebook, yeah, I probably could have put out a message and said, Does anybody have this within 30 miles and somebody would have helped me out. So what happened was, we went to change the cartridge, and I'm all proud of myself, because I've got it all laid out, and I'm calm. And so we had a good start to the pump. We really, we didn't need a lot of adjusting for whatever reason the dosing worked out pretty easily pretty quickly. So when I went to change the cartridge, I was feeling maybe overconfident. So I had everything else spread out everything right. And I realized where the cartridges were the cartridges. So I called our endocrinology office, and I called our educator and the endocrinologist called back first and said, You need a luer lock needle, and what the heck and you can't get it at a pharmacy. So my dad is gone. I'm going to the hospital. And he goes to get the luer lock needle so he can say you can screw it on to the cartridge and I had insulin I had an insulin vial. So then Lynette our educator calls me back, she says, We're gonna MacGyver this thing. And she teaches me over the phone, how to, you know, open up the cartridge had to make sure that you have enough space in it and and then we just injected the insulin and it was a regular needle. So she was really helpful, and she was so happy to do it. She was fantastic. I also had called the Animus, and they couldn't do anything that night. But the next morning, they came to my mom's house in rural Westchester County, which if you're not familiar with Westchester County, there's like old she is less than I said rural Westchester County it is what is it? It's not like there are farms there. I mean, they're like Ralph, Lauren owns a farm. But what I mean is they're tiny roads, they're not well marked. I can't say that. It's
Slade 57:11
like any other street it has. Your house has a number in his street name, I find it to be very confused. Like it was unmarked land and her whole western neighbor fought
Stacey Simms 57:20
with machetes to get to my mother's. I was impressed that they came over the next morning, and they gave me different cartridges, different samples. They were great, you know, the local rep came out so that I was, you know, I'm forever grateful for that. And God bless my dad, he found that that Laurel law needle, which we never use, and I carried for years, I probably still
Slade 57:40
have it the cap and we were in the car ready to drive. You picked up the cartridges. And we were on everyone's credit
Unknown Speaker 57:45
for that. Right? Well, I
Slade 57:46
just want to say that we were in on the conversation. We didn't just ignore that something was happening.
Stacey Simms 57:56
But I'll tell you what I learned from that. I always you know, I never like when mistakes are made. But you that's when you learn that you can do anything. Right? Because you just need help. You need to stay calm. I'm sure it was totally calm. And, you know, you get through it. And I realized that, you know, we could we could do this. We could be okay. We always could have given him a shot.
Slade 58:15
Right. I mean, that was always an option. It's still an option now. I mean, he's still sometimes today you'll take a shot. Yeah,
Stacey Simms 58:20
yeah. But for years, he was terrified after he started the pump. It was amazing. He got frightened of injections very quickly. Yeah. And
Slade 58:28
he started to recognize what they were. You know, when he was 19 months old? They didn't know Yeah. First couple ones are like oh, and then after that he would just stick his hand up in the air.
Stacey Simms 58:37
Literally. Yeah, that was funny because he didn't want to stop what he was doing. Yeah. You'd be eating
Slade 58:41
with one hand you're giving them a shot and the other hand well
Stacey Simms 58:43
and the other arm the other arm. He's ambidextrous was helped with a lot of things because you could check his blood sugar as long as he didn't have to stop playing. Right? Although you know what? I didn't mention that I should the first week almost the first two weeks I always say it was crying, sweating running because he did not like injections for those first two weeks and I just remember being heartbroken every time I had to do he would cry we had to hold him it was awful. There was a bit of
Slade 59:09
holding him down
Stacey Simms 59:09
I was so sweaty it was like so stressed sweat
Slade 59:14
the insights were holding them down what we did in is but
Stacey Simms 59:16
no no the the injections though the first first injections and then the inserts were the same way. Yeah, he still doesn't know the inserts are still scary to him 10 years later I think it's just that but he does it himself. I mean he does it you know it's it's just one of the more stressful parts you can say whatever you're thinking given me a smirk
Slade 59:34
just mother might baby I'm a little bit that's a little bit.
Stacey Simms 59:36
Well, you know what, and let's talk about that. Because I think we're really good team. I baby a baby both kids for sure. I definitely baby Benny when it comes to diabetes, I will change his cartridge. I will check his blood sugar, you know, whatever. And you do it yourself. You're on your own. I think it's a good balance. I know he can do it when he's away from me. We don't have to have it out because I know you disagree. But I think that's healthy. A lot of people feel the same way.
Slade 1:00:02
Well, I know, I don't, I don't know if I can classify it as healthy or unhealthy. I would just say that listen, at some point, you're not going to be there. I'm not going to be there. You know? And, and yeah, he has great moments where he does a great job of paying attention and taking care of himself. But the sooner he does that, the better. So I'm, you know, plus, it's part of the way I was brought up, I was brought up much more independently, where whatever I had to face personally, I had to face right. So we're a little bit on the opposite end of the spectrum, when it comes to,
Stacey Simms 1:00:40
we were brought up pretty differently. I mean, loving parents, great families, slightly different parenting styles and five boys versus two girls. Yeah.
Slade 1:00:50
You know, I'm, I just think he needs to take care of himself. And he will, he will find a way to do as little as possible. But that might just be a, you know, my 12 year old kid.
Stacey Simms 1:01:04
I think a lot of it is, but I you know, I definitely willing to admit that I, I baby him. I think though, if I didn't feel that he could do it, you know that I would feel differently. So let's talk about some of those milestones, because we, you know, we're not gonna go 10 years, year by year by year, but going to kindergarten to me, when Benny started kindergarten was stressful for me. I was really worried about it. But he was the only kid was type one in the school at the time. And we had to go to school, we had to look at the routine, we had to figure out what he was going to do. And it worked out really well. There were some bumps, but every year we would go and talk to the teacher talk to the nurses, we only had a part time nurse every year.
Slade 1:01:43
Yeah. But I think the key there again, was we presented the situation in a way where we try to instill as much confidence in the people that we're going to have to take care of them that the principal bought in teachers bought in you know, we didn't make them feel like, Hey, you have our child's life in your hands. And if you mess it up, right, we just empowered them to feel confident about I think that that makes a huge difference. It continues to make a huge difference.
Stacey Simms 1:02:15
We were also adamant with Benny that he learned I remember telling him in preschool the year before kindergarten, you know, we go to kindergarten big kids check their blood sugar themselves. And he was doing everything himself when he went to kindergarten, obviously needing adult supervision, obviously with someone looking over his shoulder. But from that from kindergarten on when he was in school, he did it himself.
Slade 1:02:36
I think from the time he was probably I would even say maybe as early as eight. He could do everything.
Stacey Simms 1:02:43
Oh, yeah. Oh, yeah. Well, fourth grade, they barely looked over his shoulder.
Slade 1:02:48
But I mean, he could do everything from Phillip cartridge restart as pump. caliber, you know, calibrate. He could do it all? Yeah. So well,
Stacey Simms 1:02:58
diabetes camp was a big part of that, too. Yeah. Yeah. I mean, he knew how to do it all but I think wanting to do it and be more independent and especially within sets that came with diabetes camp. That's funny story. Because Benny Benny went we have a little Diabetes Day Camp around here that he went to when he was like three or four years old. And then the year he was turning seven. They said, Oh, you're gonna go to the sleepaway camp. He was like, Yeah, I'm all for it. Well, it turns out, you have to be eight to go to that camp. So I called them up and they say, Oh, we thought he was older because he's a big kid. He always looked older. I said, Well, can we send him anyway because he was ready to go. And they make exceptions. So they sent him and that was the best. I mean, it really has given him a great community, because now he goes to regular now he goes to regular people. That was a next year he went to die. We just came for one year. And our daughter, I've told this story before our daughter has gone to regular camp, sleepaway camp for four weeks for a long time. And she would come home every summer and say, Benny is gonna be great when you're eight and you can come and I was always like, no, he's never going, he's not gonna go. But he went, we worked it out. We worked. We started working with the camp in January. He went in July. And this camp has a medical facility. They have doctors, nurses, they're not trained in diabetes, but that I don't think I would be comfortable sending him for that long without that there. But while he's at camp, he does everything himself. And sometimes he messes up and sometimes he doesn't. So that's I always the first you always have to hold my hand the first two or three days of sleepaway camp, I'm always like, Why did I send him? I'm so selfish. I can't believe it. I broke both. But He only says fine. They called me once. He called me the first. They were like, Hello. Yes. I have a question about Benny. You know, and I'm like, ready to throw up? Yes. What kind of do what do you like a little rich under? I thought he was like in the hospital with DKA.
Slade 1:04:47
Well, all of those moments where and pieces of experience that allowed him to be more independent have just been really good.
Stacey Simms 1:04:57
Yeah, right. Elementary School. went really well. I mean, he was really in a groove except for like some travel and some summers and some incident but we weren't going year by year. We're not. But I just want to mention where we are now. Let me lead you here. I'm the professional interviewer. Lead me. I would say that so far, middle school has been a little bit of a challenge.
Slade 1:05:18
The there's a lot more distractions. Yeah,
Stacey Simms 1:05:21
it's a huge school. And the the hormones are going bananas. So the insulin levels are going bananas. I mean, I've give him so much insulin right now gives himself so much insulin. And, you know, it's been a it's been a challenging transition as that.
Slade 1:05:38
I think all transitions are challenging, right? I mean, it's a greater level of independence, greater level of understanding, and he's got to care, right? And it's easy to get distracted. He's a 12 year old boy, it's even easier to get distracted. Right? So it's not like he doesn't know, yeah, put in under pressure, he could do whatever he had to do to take care of himself. But if he knows he doesn't have to think about it, he doesn't think about it. So
Stacey Simms 1:06:03
I opened this up to some of my Facebook friends to see if they had any questions for us and our wisdom of 10 years, your
Slade 1:06:09
Facebook friends, we have wisdom. And you have Facebook friends.
Stacey Simms 1:06:14
So Anne wants to know, she says, I would love your daughter's perspective. And I'm going to ask Leah about this. But I'm going to turn that and say, What about the attention that we had to give him and how we handled that with Leah? Because I have felt very guilty about that over the years.
Slade 1:06:34
You were much more aware of that than me. But I don't know.
Stacey Simms 1:06:43
Well, I think it comes in part because I do much more with with the diabetes in our house. I mean, not that you we were very equal team for a very long time because of our schedules. And even now, I mean, I could go away tonight, no prep, maybe I will for a couple of days. Yeah. And I wouldn't have to worry that, you know, that's great. I wouldn't have to worry, you could do everything. But you don't fuss over it as like, as I do. You know, I would definitely give him more attention. And I think what I've done over the years is just just explain to him. That's just my attempt
Slade 1:07:14
to make it norm.
Stacey Simms 1:07:15
I know, that's just who you are. I'm not criticizing. There's many other things to criticize. And so I've tried, I've talked to her about it. I've just straight up diabetes requires more attention.
Slade 1:07:25
Yeah. And as she got older, she recognized that and she you know, it bothered her. Yeah, yeah, I think he went through some pieces of it that really bothered her. But I think in some ways it kind of helped her grow. I don't want to say quicker, but grow deeper. Yeah, that's right. Yeah. And have much more self awareness. At an age maybe she wouldn't have because you probably would have called her like it did Benny for some other reasons.
Stacey Simms 1:08:01
But I tried to do things like just special things, me and her going away for a week. Right. And, you know, that kind of stuff. And that's always been nice. I think it's also helpful that it's, you know, a girl versus boy. So I can be like, Oh, mom and girl things, you know, we can do weekends away. And that kind of stuff that if I had two daughters might be differently, who knows? Whatever. The dynamics are always different. But yeah, she had a harder time with it when she was a little younger. And she's really solid about the whole thing. Now she gets it. Okay, so Shira writes Another Facebook question here. She says, has diabetes ever stopped or restricted him from doing something he wanted to do? If so, did he fight it or have to give up and accept it? She says she's concerned about her daughter being discriminated against. I don't think there's ever been a time. I will say there are times when we travel, that I I hesitate to disclose because of other people's preconceptions about diabetes. So I usually like to tell everybody, but every once in a while, you'll come across something where they say like don't get on this roller coaster, for example. And they're talking about type two, or they're talking about very, you know, being in very poor health with diabetes. Yeah, see,
Slade 1:09:08
I don't tell anybody unless I feel as though it's necessary or if I'm telling a story or if someone's inquisitive, but when he's doing an activity, he decides he wants to do the activity first. And then after he's decides he wants to do it, we'd say oh, by the way, he has type one. So here are some things he has to
Stacey Simms 1:09:25
pay attention to me. He's played baseball, basketball, right? But
Slade 1:09:29
we don't say hey, he has type one. Can he do this? We say he wants to do this. And we go, okay, yeah, he wants to do what he signed up. He's ready to go and oh, by the way,
Stacey Simms 1:09:35
well, it's always on the form, but we've looked at it looks at the form. The garage is never known. I always have to tell them. I'm trying so what has he done sports wise to did flag football?
Slade 1:09:44
Soccer, soccer for five
Stacey Simms 1:09:48
seasons soccer. He was little flags football, basketball, baseball, baseball for a long time. And then we thought he might do football this year, but he went out for the play. Yes. Very happy about that. So I don't think it stopped that hasn't stopped them. goes to regular sleep awake? He went on the field trip with his fifth grade for three days without us. Yeah. No, I don't
Slade 1:10:06
think it stopped learning anything. No, I just think that you. For us, it's not starting the conversation with diabetes and starting the conversation with is that something that we want him to do? Or we think is okay, or he really wants to do prove? Does she really want to do it? You're not just poking around? And once you, you know, you said, we're gonna start the conversation with that it's part of the conversation at the start of it. And it shouldn't be I don't think,
Stacey Simms 1:10:30
all right, Did we miss anything? Come on. It's gotta be something. Yeah. So I'm just curious to get your take, you know, I've always been really involved, I jumped right in and did the JDRF board and did all this stuff. And now I have the podcast. And, you know, what do you think of all that? I'm either fishing for compliments, or I want you to tell me that it's too much time that I should like, make dinner more.
Slade 1:10:54
Not at all, I think, listen, we we live our lives. And we tell our kids this, every chance we get right if someone's in need, and you have the ability to help you help. And that's what you're doing. Right? It's not about what's in it for you. It's not about why you should do it. It's just if you have the ability, you do it. So I mean, not only do you have the ability, and not only are you helping, but it happens to be a big part of our lives. So there, you know, I mean, it's what you should be doing. I mean, if you have a way of falling into grooves that you're supposed to fall into, right, and you're just in a really good place with it right now. Using your talent as a broadcaster to keep a dialogue open for other people that are experiencing the same things.
Stacey Simms 1:11:46
Thank you. You know, Slade and I met at a TV station and he was the behind the scenes. music instructor you think he got to sit closer to the microphone? You keep leaning back? I hope they hear you. Okay,
Slade 1:11:57
that's because my seats a long way away. She didn't set the studio up correctly, I would have done it very differently. Ah, through.
Stacey Simms 1:12:13
Okay, time to talk to Ben. This was a tough one. Not because we were emotional. But because he would prefer to make chicken noises and play with my microphone, then talk about diabetes. I think that's normal. You will notice some editing here. I did the best I could. But sometimes there was just something wacky going on. And the things I edit out or are just large pauses or me yelling at him, you know, or him like I said, making some some weird noises. I may regret not doing more editing. But I was encouraged by friends and some people that I respect and a diabetes community to leave as much as it is. So here we go. Okay, so stylee stopped you like what do you do? What's your life? Like? What are some things you would like doing?
Unknown Speaker 1:12:59
Acting?
Stacey Simms 1:13:00
So tell me about acting. When did that start?
Benny 1:13:04
Last year when I went to Camp Coleman. I was in the school, school camp play. And that's where it really started.
Stacey Simms 1:13:17
What was the play? And who did you were you
Benny 1:13:19
Oh, God don't have to say no. You don't have to. It was Larry Potter. I was haggard. So now Hagrid had GERD
Stacey Simms 1:13:28
so they could take off on Harry Potter. Yeah. And then this year in the school musical you got into that alpha musical.
Benny 1:13:33
It's the story of Buddy the shelf. It's the story of Buddy the shelf. It's the story of
Stacey Simms 1:13:43
Okay, so when you're when you're auditioning for stuff to share. When you're auditioning for something like that, I worry about diabetes, because we have to do some extra stuff. You don't really worry about
Benny 1:13:55
it though. I as soon as the show starts, I don't care about it. Well,
Stacey Simms 1:13:59
but I mean, during rehearsals you're on your own during ahead of time. Do you have to think about anything like that do
Benny 1:14:04
do ahead of time I'm, I check my blood sugar before the show. And I also correct or give myself some sugar if I need to. And then once the show starts.
Stacey Simms 1:14:19
Okay, very nice. But when what was interesting about this show is that one of the kids on the tech crew has type one. And he might Oh miles Yeah. And he helped you out before going to help me out. Yeah, before one of the bow was I thought we'd be better to send miles than another kid or a teacher because they might have panicked was miles cool about it.
Benny 1:14:38
Yeah, he was like band aid. You blood check as well. change something or eat something or get drunk.
Stacey Simms 1:14:44
I don't think he said get drunk.
Unknown Speaker 1:14:46
Get it because
Stacey Simms 1:14:47
I got it. But was he? Does that make a little bit easier knowing that he understood? Yes. Yes. Okay. All right. So what stinks about diabetes like what makes you go Oh, All the time besides your mother.
Benny 1:15:04
Okay. So, okay, so it's hard and annoying, and dumb, is stupid. And it can fly because it has Dumbo the elephant. Hey, I'm trying to make this fun. You is making this boring. You you is like, no, no, no, no, no, no, no, no. No. And I'm like, no, no, no. I'm like, yeah, and you're like, done. I'm gonna Yeah. And you're like, you're like,
Stacey Simms 1:15:40
you're all part of the. Alright. I got a question from someone on Facebook who wanted to know if you tell new friends that you have type one, like, right away, which I think I know the answer to but I'm I
Benny 1:15:52
do not tell them right away. But if my blood sugar ever goes low with them only low? I'll tell them and I'll explain needed to them. And then they give me food.
Stacey Simms 1:16:07
Yeah, well, you've a couple of friends in the neighborhood that you've known forever. Yeah, like
Unknown Speaker 1:16:11
Kailyn. Miller,
Stacey Simms 1:16:12
does he know what to do? Or does Yeah, you know,
Benny 1:16:14
blood sugar's low. He went upstairs and KISSmetrics. That's good.
Stacey Simms 1:16:18
And I know one of your favorite things to do in this neighborhood is riding your bike and jumping on a trampoline. Oh, that's fun. Any advice for kids who are newly diagnosed with type one?
Benny 1:16:28
Don't be scared. Or I'm going to find you and tickle you to death?
Stacey Simms 1:16:33
What if they worry that they will be able to do some things that their friends can
Benny 1:16:36
do? Well, then you should stop doing that. Yeah, that should stop thinking about not being able to, and you should do it. Well,
Stacey Simms 1:16:45
how do you do it? If you're worried about your blood sugar? You
Benny 1:16:47
shouldn't be worried? Because your mom is there.
Stacey Simms 1:16:54
Tell me what goes on. Like when you were playing baseball.
Unknown Speaker 1:16:58
My mom was there.
Stacey Simms 1:17:00
Do you understand that you have diabetes? When you think about it. And I assume that one of the worst things that you go through is the annual blood draw. Yeah, blood just scary. Yeah. Tell me about that. When you were little it was really it was
Benny 1:17:10
scary. And one time, they were like sticking a needle in my arm. And it's like, I want to look away but I can't. But I want to look away but I can't. But I want to play but can't.
Stacey Simms 1:17:26
Does it hurt more? When you look at it? It
Benny 1:17:28
hurts more when it's not in? Oh, once it goes in? It's okay. But it's like it punctured his skin like and then it's an unusually cook.
Stacey Simms 1:17:39
We should get you some voice work on cartoons. You'd be good at that.
Unknown Speaker 1:17:45
You need to put all of this. How
Stacey Simms 1:17:47
do you feel when you're low?
Benny 1:17:48
I feel my legs are like not working. And I don't make sense.
Stacey Simms 1:17:55
Have you ever been in a situation at school this year where you've been low and felt like that? Like what
Speaker 1 1:18:00
do you do at school? I can get you sparks very illuminate
Stacey Simms 1:18:09
How do you feel when you're high? Are you high right now that would explain? How do you feel?
Unknown Speaker 1:18:13
I could go Yeah, no, don't
Stacey Simms 1:18:16
go black. I know you don't remember first getting the pump because you were too little. Do you remember throwing it across the floor the first night? Yeah,
Speaker 1 1:18:23
but I remember you telling me Do you remember the little
Stacey Simms 1:18:27
pouches used to have with like the cartoon characters on
Unknown Speaker 1:18:30
them and stuff? No. Okay.
Stacey Simms 1:18:32
What do you think of the Dexcom? Like, how about
Benny 1:18:35
a scaly sometimes, but why is it so good? Because big needle? Oh, putting
Stacey Simms 1:18:39
it on is scary. Yeah, it is kind of critical.
Benny 1:18:41
And Daddy, like you slowly take out the other side. And he like, can't get it out and he's like, then he can't put the transmitter and tear up the other side without breaking my arm, but was
Stacey Simms 1:18:56
unwilling to let me do it. If he does because you're bad at it.
Benny 1:18:59
I'm worse. Yes. They're my bed. Because you go like you go really slowing and really slow. And then you like, in you one time you didn't take it out or you tried to pull it out and you broke my arm.
Stacey Simms 1:19:19
I can't wait till they get that new inserter Okay, let me ask you, what would you tell a newly diagnosed kid who's afraid or worried about playing sports? You play a lot of sports?
Benny 1:19:33
Oh, well, don't don't tell him to not be worried because my first year that was by far the most supportive year I had had with diabetes, especially in baseball. It was that first year I tried. And my coaches were really good. And everyone was just really supportive. That's great.
Stacey Simms 1:19:57
How would you explain it to your friends if you were just you knew Your blood sugar was high and it was making you cuckoo.
Benny 1:20:01
I would tell them and that if I said anything completely Bozo with lithic that it was just the blood sugar talking
Stacey Simms 1:20:10
you would you would make them aware you wouldn't try to cover it up. When you're riding the school bus. Did you ever go low? And if so, what did you do about it? So actually,
Benny 1:20:18
one time my inset came out on the bus and I went to the Buster I mean, I'm like, step on it. No, you didn't. We went we went faster. Is that a
Lea 1:20:31
true story? Yeah, that's not a good story. Why?
Stacey Simms 1:20:33
What's your favorite treatment for low blood sugar?
Unknown Speaker 1:20:38
Does straight sugar
Stacey Simms 1:20:40
really like sugar packets?
Speaker 1 1:20:42
No, like remember to sugar things that Oh, no. The sugar packets I used to buy that ran out of business a glucose powder. That glucose puppies. Those
Stacey Simms 1:20:52
were great. Oh, that's right. I forgot all about that. Okay, so if you can't have those, what do you like? And our dog is here now. Just back juice boxes. Tell me about diabetes camp. Is it? Do you sit around and just say Woe is me? We have diabetes. Can you sing the song? The one that's kind of outdated? Do you remember what I'm talking about? Sing that for me. Come on.
Benny 1:21:11
I'm okay. Our fingers and repeat yawn is sick. We can't eat sugar because it makes us sick. But we're diabetics and will never fail. Because see, Li Na, chariots?
Stacey Simms 1:21:25
Tell me before we go about regular camp because a lot of kids with tripe. Whoa. Alright, let's talk. Regular camp
Benny 1:21:31
is fun. And as long as people somewhat know about your diabetes, you're okay. But don't go if you're newly diagnosed. Why? Because you want to get used to it before. Before you like go on an adventure with it.
Stacey Simms 1:21:49
What do you have to get used to? Everything? I'm asking for real? Like what do you want to
Benny 1:21:54
get used to changing your own insets because people will not do that for you. Especially a diabetes camp like Jeffrey wouldn't me you wouldn't do it for me. Right?
Stacey Simms 1:22:04
But if you were newly diagnosed, they would help you diabetes camp. They just know your shenanigans. Jeffrey's known you since you were little. Yes, those mothers your diabetes educator.
Unknown Speaker 1:22:14
She is.
Stacey Simms 1:22:17
Um, what else do you do? Because when you're over here, up here, the dogs that have microphones. When you are at regular sleepaway camp, you have to change your insets change your cartridges, everything pretty much right? Mm hmm. Is that ever scary? Or is it just part of going to camp?
Benny 1:22:31
It's just part of going to camp sometimes it's scary. But other times it's fun.
Stacey Simms 1:22:36
Is it worth doing? Like? Is it worth all the work to go to camp? Yes. What do you do that you like it so much? Like why? Gaga? Oh, so what are things you like about Kim Coleman's Gaga ball? Tell me about why. So
Benny 1:22:47
it's fun, because there are other better people and it's challenging to win. And you also get to have fun, and it's the most favorite game of all time.
Stacey Simms 1:23:00
Do you get homesick when you're away? Nope.
Benny 1:23:02
People do that. Me too. And I know homesick. I know homesick until the day we come home. Alright, so here's the question. We talked with us because my home is kept coming home away from home. I'm homesick when we get home.
Stacey Simms 1:23:15
We talked about this when we did that presentation in Atlanta. What are some dumb things you've had to deal with? That people who don't understand diabetes have
Speaker 1 1:23:21
asked you? Why do you have a phone? Why are you a robot?
Stacey Simms 1:23:26
What do you tell them? Like do
Speaker 1 1:23:28
they really think it came from alien world?
Stacey Simms 1:23:31
Do they think your phone's pumpers? Yeah, they
Benny 1:23:33
think my mom has a phone and when they think when they say Why do you have robot stuff on you? I say I come from a different world. Do you ever
Stacey Simms 1:23:41
just tell them straight up? Once you do when you were little I did when I was little
Benny 1:23:46
but like now I just joke around with them. And it's like, I came from a D from planet. I am here to the
Stacey Simms 1:23:56
What about Vice illustrate with the nurse at camp? Oh
Benny 1:23:58
God, no, you can do it right now did it? So
Stacey Simms 1:24:01
my understanding is that Benny whether there are great medical staff at this camp, but they don't specialize in diabetes. And so there was a nurse who saw you eating ice cream. Were you asked to eat ice cream. Oh, I
Unknown Speaker 1:24:13
asked if I could have smart pop. Oh, and
Stacey Simms 1:24:15
she said what's your A1C? And you were like, why? You were like nine years old? Right? So what did you do?
Unknown Speaker 1:24:24
I didn't know. Remember? No, that's what I did. Oh, you
Stacey Simms 1:24:29
see you didn't know your A1C because I didn't. So did you eat to smart pop anyway? Yeah,
Unknown Speaker 1:24:32
I was like, not once.
Stacey Simms 1:24:34
I think you found another nurse. Right? I remember when the nurses were involved in popcorn. Were you in the infirmary? Yeah. Okay.
Benny 1:24:41
Tell the other one about the sugar. I don't remember that one. Okay, so, um, I want it smart pump again, because smart pump is the best. And she said how much sugar is in it? And I'm like, and I said, I don't need to know how much sugar is in it. And she's like, yes, you do. It. And I said, No, I don't I need to know how many carbs and she's like, who's your doctor? They're obviously not telling you right? Yeah, that's right.
Stacey Simms 1:25:07
That's right. Well, my favorite was when one year I said something to them. No when your the nurses sent me a text, and they said, when you grow up to you that you could be a diabetes educator, you knew so much indicator and you said, I
Speaker 1 1:25:22
already have a diabetes educator. Because that was because you basically
Stacey Simms 1:25:25
are you feel you're gonna be okay. Yes. When you grow up you're gonna be actor. What kind of actor like singing dancing, action movies. All of the above?
Benny 1:25:36
All of the above, minus gooey Tiki movies and Macbeth.
Stacey Simms 1:25:46
So no kissing and no Shakespeare. No, other than that you're okay. Well, Benny, it's been a great pleasure talking to you today.
Benny 1:25:54
I didn't know this was fun. I get a ruin the whole show.
Stacey Simms 1:25:57
I'm not sure we have anything we can use. But I appreciate your time.
Unknown Speaker 1:26:00
You appreciate the thought.
Stacey Simms 1:26:07
You're listening to Diabetes Connections with Stacey Simms. He is exactly the same, right? He's exactly the same, just with a deeper voice. Honestly, what a joy for me to listen back to that to Benny Antalya. And to my husband, who doesn't really talk that much about diabetes going to mom's night out. He's been at all the moms night out events. He has loved it. It's been wonderful for me to watch. He's asked some questions of people he's spoken up. It's been really cool. But that's the only time that we've ever really sat down and analyzed diabetes in that way. And by the way, if you have a podcast and you have kids, make sure to record them. As soon as you start your podcast. It was just such a cool time capsule. For me to hear to hear both kids and Leah is exactly the same to me. She's got the same mannerisms. She speaks exactly the same. Her voice is a little younger. She was already in high school at that time, but you know, she's on her own. She's an adult with a job but not in my house, which is good and sad as well, but she's pretty cool kid. Alright, if you liked what you heard, please share this episode. It's an unusual one. I'd love to see what the reaction is. And please join me for mom's Night Out Charlotte in February, and our other three stops in 2024. I will link that up in the show notes as well. Thanks to my editor John Buchanan's for audio editing solutions. Thank you so much for listening. I'll see you back here soon. Until then. Be kind to yourself.
Benny 1:27:30
Diabetes Connections is a production of Stacey Simms media. All rights reserved. All rounds avenged
Transcribed by https://otter.ai
It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: infusion set recall, update on ViaCyte stem cell research, a few new studies look at sleep and diabetes, actual clinical research into cinnamon for type 1 and lots more.
Links & transcript below
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
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Sign up for our newsletter here
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Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
Episode transcript:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now.
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In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark
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Our top story this week…
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A recall of infusion sets. This is the VariSoft infusion set used with Tandem Diabetes Pumps. The recall here isn’t new.. but the FDA has changed the rating to Class 1, its most serious. The VariSoft version is flexible and can be put in place at an insertion angle anywhere between 20 and 45 degrees, it’s usually recommended for people “who are thin or who have scar tissue or limiting potential insertion sites.”
The problem is that the connector can detach from the set – which means no insulin is going in. To date, according to the FDA notice, there has only been one report of injury related to the recall.
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An already existing drug may help preserve beta cell function in people with new onset type 1. It’s got a very long name, so it’s usually referred to as DFMO. It inhibits a pathway, which plays a role in the inflammatory responses in autoimmune diseases, including type 1 diabetes. It's sold under a few names for different conditions, including Vaniqa which is a cream for unwanted hair growth in women. It also has orphan designations for treating various cancers, including neuroblastoma.
The new safety study by Sims and colleagues, which was published November 1 in Cell Medicine Reports, enrolled 41 people with type 1 diabetes that had been diagnosed within the previous 8 months, including 31 children. Participants were randomly assigned to undergo oral treatment with DFMO at one of five doses or placebo for 3 months, with 3 additional months of follow-up.
Following a mixed-meal tolerance test at 6 months, the C-peptide area under the curve ― a measure of beta-cell function ― was significantly higher with the three highest DFMO doses compared to placebo (P = .02, .03, and .02 for 125 mg/m2, 750 mg/m2, and 1000 mg/m2, respectively).
https://www.medscape.com/viewarticle/998671?form=fpf
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Despite earlier promising findings, it seems unlikely that cinnamon can improve blood sugar levels in people with type 1, or insulin-dependent, diabetes, researchers report.
Previous research has shown that cinnamon appears to help fat cells recognize and respond to insulin. In test tube experiments and in animal studies, the spice led to a noteworthy increase in the processing of glucose. Moreover, in a previous study of people with type 2, or non-insulin dependent, diabetes, those who incorporated a small amount of cinnamon each day for 40 days into their normal diets experienced a healthy drop in blood sugar levels.
But a new study of teenagers with type 1 showed cinnamon made no difference after 90 days .
In fact, "In essentially all outcomes...the trend favored the placebo group, although did not achieve statistical significance," the researchers report.
https://www.reuters.com/article/us-cinnamon-diabetes-idUSSIB65463020070406/
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New results from ViaCyte clinical trials – that’s a stem cell-based treatment for type 1 diabetes. The therapy aims to replace the insulin-producing beta cells that people with type 1 diabetes lack. Dubbed VC-02, the small medical implant contains millions of lab-grown pancreatic islet cells, including beta cells. The devices—approximately the size of a Band-Aid and no thicker than a credit card—are implanted just beneath a patient's skin where it is hoped they will provide a steady, long-term regulated supply of self-sustaining insulin. The clinical trial was conducted at Vancouver General Hospital, with additional sites in Belgium and the U.S. Ten participants, each of whom had no detectable insulin production at the start of the study, underwent surgery to receive up to 10 device implants each.
Six months later, three participants showed significant markers of insulin production and maintained those levels throughout the remainder of the year-long study. These participants spent more time in an optimal blood glucose range and reduced their intake of externally administered insulin.
One participant, in particular, showed remarkable improvement, with time spent in the target blood glucose range increasing from 55% to 85%, and a 44% reduction in their daily insulin administration.
In another ongoing trial, the UBC-VCH team is investigating whether a version of the device containing cells that have been genetically engineered to evade the immune system, using CRISPR gene-editing technology, could eliminate the need for participants to take immunosuppressant drugs alongside the treatment.
https://medicalxpress.com/news/2023-11-stem-cell-based-treatment-blood-sugar.html
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A new look at sleep quality in people with type 1 finding that more time in range means better sleep. No surprise here, but important to quantify. Interestingly, recurrent high or low blood sugar, rather than constant or prolonged higher levels seems associated with worse sleep.
A study in adults with type 1 diabetes showed that 17.7% wake up every night, and 53.5% wake up once or twice a week1. This was a small pilot study – the researchers want to now move to a larger one.
https://www.nature.com/articles/s41598-023-47351-x
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New study looks at women, sleep and insulin sensitivity. This is a small study, only 40 women, which found that particularly post menopausal women who sleep less 7 hours per night may have impaired insulin sensitivity regardless of body fat.
Nearly 40 women were randomly assigned to either restricted sleep or adequate sleep for 6 weeks, then crossed over to the other sleep condition. During sleep restriction, women slept an average of 6.2 hours per night vs 7-9 hours per night. Both fasting insulin levels and insulin resistance were significantly increased during sleep restriction with more insulin needed to normalize glucose. These researchers say if sustained over time, it is possible that prolonged insufficient sleep among individuals with prediabetes could accelerate the progression to type 2 diabetes
https://www.medscape.com/viewarticle/insufficient-sleep-impairs-womens-insulin-sensitivity-2023a1000tlz
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Pregnant women with type 2 who use CGM saw improvement in blood glucose levels but only if they used the device more than 50% of the time during their pregnancy. This study involved high-risk women from regional and remote Australia all with type 2. No changes in diabetes metrics were seen in those who used the CGM only early or late in their pregnancies.
https://www.healio.com/news/endocrinology/20231128/greater-use-of-cgm-linked-to-glycemic-benefits-for-pregnant-women-with-type-2-diabetes
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Commercial
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When it comes to walking and type 2 diabetes risk, it’s not just how much you do it that helps — it’s also how fast you move, a new study has found.
Brisk walking is associated with a nearly 40% lower risk of developing type 2 diabetes later in life, according to the study published Tuesday in the British Journal of Sports Medicine.
“Previous studies have indicated that frequent walking was associated with a lower risk of developing type 2 diabetes in the general population, in a way that those with more time spent walking per day were at a lower risk,” said the study’s lead author Dr. Ahmad Jayedi, a research assistant at the Social Determinants of Health Research Center at the Semnan University of Medical Sciences in Iran.
The study authors reviewed 10 previous studies conducted between 1999 and 2022, which assessed links between walking speed — measured by objective timed tests or subjective reports from participants — and the development of type 2 diabetes among adults from the United States, the United Kingdom and Japan.
After a follow-up period of eight years on average, compared with easy or casual walking those who walked an average or normal pace had a 15% lower risk of developing type 2 diabetes, the researchers found. Walking at a “fairly brisk” pace meant a 24% lower risk than those who easily or casually walked. And “brisk/striding walking had the biggest benefit: a 39% reduction in risk.
Easy or casual walking was defined as less than 2 miles per hour. Average or normal pace was defined as 2 to 3 miles per hour. A “fairly brisk” pace was 3 to 4 miles per hour. And “brisk/striding walking” was more than 4 per hour. Each kilometer increase in walking speed above brisk was associated with a 9% lower risk of developing the disease.
https://www.cnn.com/2023/11/28/health/walking-speed-lowers-diabetes-risk-wellness/index.html
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Not a lot of events happening in December but there are two to tell you about:
Beyond Type 2 virtual summit
https://beyondtype2.org/registration-type-2-diabetes-virtual-summit/
At Moms' Night Out Providence, I was part of an Ask Us Anything panel that included Moira McCarthy and Kerri Sparling. We had a lot of fun on this panel and a lot of fun at MNO period. If you’re wondering what this event is all about, I think this panel will give you a lot of insight. It’s serious, and humorous, I hope helpful, and it’s all peer to peer – we’re not doctors.
Moira McCarthy’s daughter, Lauren, was marking 26 years with T1D during this event! Moira is a ski, adventure and travel writer. A JDRF International Volunteer of the Year and author of six books including, “Raising Teens with Diabetes.” Her blog Despite Diabetes helped me a lot and she’s left it up as a resource.
Kerri Sparling is a writer, poet and speaker who has dedicated her life to the power of the patient narrative. Best known for the blog and book, “SixUntilMe,” she is the author of “Balancing Diabetes” and “Rage Bolus and other poems.” Kerri has lived with type 1 for 37 years.
Our next MNO is in Charlotte in February
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
This week, Mila Clark became a popular advocate for type 2 diabetes after her diagnosis in 2016 But she was actually one of the many adults misdiagnosed – she actually lives with LADA. One of the biggest changes she experienced was how her health care providers treated her, they were much more supportive when they realized she had LADA – also called type 1.5.
Mila is working to reduce the stigma around all types of diabetes. We talk about her advocacy, her Hangry Woman business, the unique patch pump she’s using and a lot more.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Find out more about LADA
Our previous episode with Mila here
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
Do you know your rights with diabetes? Our guest this week is John Griffin, a trial lawyer with more than 30 years of advocating in and out of the courtroom. He lives with type 2 himself – this is an eye opening and useful conversation.
Griffin served as National Chair of the Board of the American Diabetes Association in 2011, and is the former Chair of the Association’s Legislative and Regulatory Subcommittee.
Also, if you’ve been given a blood glucose meter you probably know how to use it, but do you know how it works? We’ll explain the chemistry going on here
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
More information about how your glucose meter works:
The information explaining Metformin comes from DiaTribe
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
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The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up today (no spam we promise)
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
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It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: Novo Nordisk will discontinue Levemir by the end of 2024, Tandem begins limited launch of software updates that will include Dexcom's G7, Beta Bionics iLet pump will be covered until some pharmacy plans, and lots more!
Links and transcript below
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now.
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In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark
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This week was World Diabetes Day so there is a LOT going on..
Our top story is
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Novo Nordisk said on Wednesday it would discontinue its long-acting insulin Levemir in the United States, citing manufacturing constraints, reduced patient access and available alternatives.
The Danish drugmaker said supply disruptions would start in mid-January, followed by discontinuation of the Levemir injection pen in April and of Levemir vials by the end of 2024.
Novo has another long-acting insulin, Tresiba, on the market and says quote - "global manufacturing constraints, significant formulary losses impacting patient access effective in January 2024, and the availability of alternative options in the U.S. market" are key factors in the decision.
The announcement comes eight months after Novo said it would cut U.S. list prices for several of its insulin products next year, including a 65% reduction in the list price of Levemir. Novo, which overtook LVMH (LVMH.PA) as Europe's most valuable listed company this year, posted record operating profit for the third quarter, with sales of its obesity drug Wegovy reaching $1.36 billion, up 28% from the previous quarter.
https://www.reuters.com/business/healthcare-pharmaceuticals/novo-nordisk-discontinue-levemir-insulin-us-market-2023-11-08/
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Big news from Tandem Diabetes this week – first, their Control IQ algorithm gets FDA approval for children as young as two years old. the technology’s original 2019 clearance limited its use to those aged 6 and older.
And.. they are officially rolling out the software update that will allow users to connect to either the Dexcom G6 or G7 CGM. If you’re in the limited launch you got an email this week telling you the next steps – wider release is expected gradually in the first part of 2024. Integration with Abbot’s FreeStyle Libre is expected very soon as well – which would mean Tandem’s tslim x2 and Mobi pumps would be compatible with three CGMs. Full disclosure: there wasn’t a media release that I received on this, but my son is in the limited launch group so we got the email.
https://www.fiercebiotech.com/medtech/tandem-diabetes-care-cruises-fda-ok-toddler-use-automated-insulin-delivery-algorithm
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Beta Bionics iLet pump and its supplies are now covered as part of some pharmacy benefits - Express Scripts added it to its national formulary list. Historically, insulin pumps fall under the durable medical equipment (DME) insurance benefit. Usually pharmacy benefits are more flexible with fewer up front costs.
The system uses an adaptive, closed-loop algorithm that initializes with the user’s body weight and requires no additional insulin dosing parameters. The algorithm removes the need to manually adjust insulin pump therapy settings and variables.
iLet simplifies mealtime use by replacing conventional carb counting with its meal announcement feature. This enables users to estimate the amount of carbs in their meal, categorized as “small,” “medium” or “large.” Over time, the algorithm learns to respond to users’ individual insulin needs.
https://www.drugdeliverybusiness.com/beta-bionics-pharmacy-benefit-bionic-pancreas/
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The UK has launched a pioneering study to explore the development of type 1 diabetes in adults which aims to screen 20,000 individuals. Research will enable earlier and safer diagnosis of type 1 diabetes through blood tests. This makes the UK the first country to implement general population screening for type 1 diabetes in both children and adults. The Type 1 Diabetes Risk in Adults (T1DRA) study, launched on World Diabetes Day, seeks to enroll 20,000 adults aged 18 to 70.
Supported by The Leona M. and Harry B. Helmsley Charitable Trust and building on the Diabetes UK-funded Bart’s Oxford Family study (BOX), T1DRA aims to unravel the mysteries of adult-onset type 1 diabetes.
https://www.diabetes.co.uk/news/2023/nov/groundbreaking-study-to-screen-20000-adults-for-type-1-diabetes.html
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The National Institute for Health and Care Excellence (NICE), England’s cost-effectiveness watchdog, has finalized a draft guidance regarding hybrid closed-loop systems, concluding that the technology should be made broadly affordable and accessible to help people with Type 1 diabetes better manage the condition.
In this month’s final draft guidance (PDF), NICE recommended that hybrid closed-loop technology be offered to all people with Type 1 diabetes who are having trouble controlling the condition using their existing devices.
NICE said that it has already devised a five-year rollout plan with the NHS to bring the technology to people with Type 1 diabetes. Hybrid closed-loop systems will be offered first to children, young people, existing insulin pump users and women who are pregnant or planning to become pregnant, after which they’ll be issued to adults who have an average HbA1c reading of at least 7.5%.
https://www.fiercebiotech.com/medtech/nice-recommends-hybrid-closed-loop-systems-type-1-diabetes-prompting-praise-medtronic
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Commercial
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Kyle Banks was diagnosed with type 1 diabetes on November 1, 2015 while performing with the traveling production of Disney’s The Lion King. Performing nightly for sold out audiences across the country was a dream come true, but after experiencing symptoms of the onset of type 1 diabetes, the dream temporarily turned into a nightmare. The symptoms he experienced were typical for the onset of this chronic illness. but with limited knowledge of type 1 diabetes, he had no idea what was occurring or the drastic life change that would soon follow. In 2020, he founded Kyler Cares in partnership with Children’s Hospital New Orleans and has since connected with families from across the country that are living with this disease. Kyler Cares seeks to improve health outcomes for people of color living with diabetes and ensuring families can access the resources and technology available for better management is the route the organization is taking to achieve that goal.
At Kyler Cares we’re working to improve health outcomes for people of color living with diabetes by improving access to diabetes technology, creating connections to education and resources, and fostering community as an added system of support on our journeys.
Kyler Bear & Friends’ T1 Diaries is an eight-part animated series for kids, dedicated to storytelling about life with Type 1 Diabetes. Our series is more than just an educational tool; it’s a reflection of real-life stories and an avenue to strengthen community ties. It’s a vehicle for us to inspire young people to begin laying a foundation of knowledge and self-confidence with management of T1D that will resonate throughout their lives until a cure for the disease is discovered.
By supporting this series with a donation, you will be contributing to a project that not only educates and informs but also offers comfort and a sense of belonging to kids navigating life with T1D. ‘Kyler Bear’s T1 Diaries’ isn’t just a series; it’s a beacon of hope, a source of information, and a testament to the strength found in our amazing T1D community. Join us in bringing these stories to life
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Married At First Sight UK ends this week, but one bride says viewers haven't seen her whole story.
Fans will find out if Tasha Jay, 25, decides to stay with partner Paul Liba on the Channel 4 show.
But Tasha, who has type 1 diabetes, has spoken out about how footage about her condition didn't make the final cut.
While she's "really sad" that it was left out, Tasha's pleased that people are now realising why she behaved in a certain way on the show at times.
Married at First Sight - or MAFS - is a social experiment where experts match complete strangers who try to live as a couple.
Tasha says her wedding day with Paul on the show was a "really beautiful moment" that included her telling Paul about her diabetes and his reaction.
"I got filmed taking my insulin and checking my blood sugar," she tells BBC Newsbeat..
Tasha was diagnosed at aged two and half and says people have asked why that part of her was hidden in the show.
"And I'm like I didn't hide it," she says.
"For whatever reason they haven't shown it, which really upsets me because diabetes is a part of my story."
Tasha believes that, if people had known about her diabetes, it would have changed their perception of certain moments in the show.
At Moms' Night Out Providence, I was part of an Ask Us Anything panel that included Moira McCarthy and Kerri Sparling. We had a lot of fun on this panel and a lot of fun at MNO period. If you’re wondering what this event is all about, I think this panel will give you a lot of insight. It’s serious, and humorous, I hope helpful, and it’s all peer to peer – we’re not doctors.
Moira McCarthy’s daughter, Lauren, was marking 26 years with T1D during this event! Moira is a ski, adventure and travel writer. A JDRF International Volunteer of the Year and author of six books including, “Raising Teens with Diabetes.” Her blog Despite Diabetes helped me a lot and she’s left it up as a resource.
Kerri Sparling is a writer, poet and speaker who has dedicated her life to the power of the patient narrative. Best known for the blog and book, “SixUntilMe,” she is the author of “Balancing Diabetes” and “Rage Bolus and other poems.” Kerri has lived with type 1 for 37 years.
Our next MNO is in Charlotte in February
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
Dr. Mike Natter took a non-traditional path to becoming an endocrinologist, starting out as an art student. But it turns out, the universal language of drawing can help break down barriers
Mike lives with type 1 – he was diagnosed at age 9. This is a wide ranging interview, we talk about his diagnosis at age 9, finishing his medical residency in NYC during the height of COVID, what he learned from his test run with the new Beta Bionics iLet pump, and a lot more.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
This is the first episode of our new show, Diabetes Connections TYPE 2.
Here's what we're talking about:
What IS an A1C? What you need to know about this all-important number.
My guest is a sports photographer and journalist. We’re going to talk about what it takes to do that job and how he was diagnosed with diabetes after a tough run in with the Texas heat..
And hey this is our first episode – we’ll get to know each other a little bit.
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.
--
A1C information from:
and the American Diabetes Assocation
More about the history of Diabetes Awareness Month & World Diabetes Day
--
Find out more about Moms' Night Out
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It’s In the News, a look at the top stories and headlines from the diabetes community happening now. Top stories this week: a new study looks at pancreatic exocrine-endocrine “crosstalk,” weekly basal for T1D moves forward, a Chinese company gets European approval for its CGM, a look at air pollution as a cause of T2D, lots of info and advocacy for Diabetes Awareness Month including some movies and documentaries.
Links and transcript below
Find out more about Moms' Night Out
Please visit our Sponsors & Partners - they help make the show possible!
Edgepark Medical Supplies
Check out VIVI Cap to protect your insulin from extreme temperatures
Learn more about AG1 from Athletic Greens
Drive research that matters through the T1D Exchange
The best way to keep up with Stacey and the show is by signing up for our weekly newsletter:
Sign up for our newsletter here
Here's where to find us:
Learn more about everything at our home page www.diabetes-connections.com
Reach out with questions or comments: info@diabetes-connections.com
Episode Transcript:
Hello and welcome to Diabetes Connections In the News! I’m Stacey Simms and every other Friday I bring you a short episode with the top diabetes stories and headlines happening now.
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In the news is brought to you by Edgepark simplify your diabetes journey with Edgepark
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It’s Diabetes Awareness Month so you’re going to see a lot of advocacy posts and hear about all types of diabetes and technology and advances. It’s always diabetes awareness month around here, so I’m not going to talk about each and every one of these campaigns.. but I’ll share more on social.
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Our top story this week, In the largest study of its kind, researchers at Vanderbilt University Medical Center have identified unexpected alterations in the exocrine tissues of the pancreas that occur in the two major forms of diabetes, and with aging and obesity.
They’re calling this a report on pancreatic exocrine-endocrine “crosstalk.” I’m not going to do it justice, it’s pretty complex, so please check out the show notes with all the links.
They say their work, published in the journal Diabetes, represents a significant advance in understanding how Type 1 and Type 2 diabetes, alter the digestive enzyme-secreting exocrine portion of the pancreas. Not just the parts that make insulin.
The pancreas has been very difficult to study because it is surrounded by other vital organs, hard to access, and it quickly deteriorates. Pancreas tissue for study must come from deceased donors or fragments of surgical specimens and those are hard to come by. This group says they were able to study an unprecedently large and well-preserved group of tissue samples from 119 donors.
https://news.vumc.org/2023/11/01/pancreas-crosstalk-may-influence-course-of-type-1-and-type-2-diabetes/#:~:text=VUMC%20Reporter-,Pancreas%20%E2%80%9Ccrosstalk%E2%80%9D%20may%20influence%20course%20of%20Type,1%20and%20Type%202%20diabetes&text=In%20the%20largest%20study%20of,and%20with%20aging%20and%20obesity.
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Another promising study about Insulin icodec, a once-weekly basal injection – this time for type 1 diabetes. We’ve been following this for a while and the results of the year-long phase 3 clinical trial are in.
After 26 weeks, once weekly basal looks just about the same as daily basal in terms of overall diabetes control. The group that received daily injections had their A1Cs go down to 7.1, the group that got the weekly basal was at 7.15.
These researchers say it’s very promising, but further analysis of CGM data and real world studies are needed to keep moving forward.
https://www.technologynetworks.com/drug-discovery/news/weekly-insulin-for-type-1-diabetes-has-the-potential-to-be-as-effective-as-daily-regimens-trial-380487
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air pollution raises risk of type 2 diabetes, says a landmark study out of India. This was a seven year study of 12,000 people and showed Inhaling polluted air increases the risk of type 2 diabetes, the first study of its kind in India has found.
When inhaled, PM2.5 particles – which are 30 times thinner than a strand of hair – can enter the bloodstream and cause several respiratory and cardiovascular diseases. India is one of the worst countries in the world for air pollution. These researchers say
“Until now, we had assumed that diet, obesity and physical exercise were some of the factors explaining why urban Indians had higher prevalence of diabetes than rural Indians,” said Dr V Mohan, chairman of the Madras Diabetes Research Foundation and one of the authors of the paper. “This study is an eye-opener because now we have found a new cause for diabetes that is pollution.”
https://www.theguardian.com/global-development/2023/nov/01/air-pollution-raises-risk-of-type-2-diabetes-says-landmark-indian-study-acc
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Time-restricted eating, also known as intermittent fasting, can help people with Type 2 diabetes lose weight and control their blood sugar levels, according to a new study published in JAMA Network Open from researchers at the University of Illinois Chicago.
Participants who ate only during an eight-hour window between noon and 8 p.m. each day actually lost more weight over six months than participants who were instructed to reduce their calorie intake by 25%. Both groups had similar reductions in long-term blood sugar levels, as measured by a test of hemoglobin A1C, which shows blood sugar levels over the past three months.
Senior author Krista Varady said that participants in the time-restricted eating group had an easier time following the regime than those in the calorie-reducing group. The researchers believe this is partly because patients with diabetes are generally told to cut back on calories by their doctors as a first line of defense, so many of these participants likely had already tried — and struggled with — that form of dieting. And while the participants in the time-restricted eating group were not instructed to reduce their calorie intake, they ended up doing so by eating within a fixed window.
Just over half the participants in the study were Black and another 40% were Hispanic. This is notable as diabetes is particularly prevalent among those groups, so having studies that document the success of time-restricted eating for them is particularly useful, the researchers said.
The study was small a
https://today.uic.edu/intermittent-fasting-diabetes-weight-loss/
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New CGM approved in Europe. Sibionics CGM says they have more than 600-thousand users for their GS1 CGM, mostly in hospitals. It’s a 14 day no calibration system with data sharing. They also make a Continuous Ketone Monitoring System(CKM). The company, based in China, says GS1 CGM products will gradually become available for pre-sales in EU countries, the UK, and other European countries.
https://www.prnewswire.com/news-releases/sibionics-achieves-milestone-receiving-ce-mark-for-its-groundbreaking-gs1-continuous-glucose-monitoring-system-301974051.html
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Commercial – Edgepark
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Couple of movie updates for Diabetes Month! We’ve been following Pay or Die since it was in production, and it’s now in selected theaters with a digital release on Paramont Plus coming Nov 14th. All about the high price of insulin – and the personal cost – this release means the movie is eligible for an Oscar nomination for best documentary.
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The short film Type 1 is also available to stream.. you may recall we talked to the writer behind this project is Noah Averbach-Katz, who appeared in Star Trek Discovery. His wife Mary Wiseman has a starring role and the whole Star Trek community got behind this project. The two star in the short movie which explores the barriers to insulin access put in place for diabetics through a Type 1 diabetic and his wife during their desperate search for insulin. It’s presented in partnership with
with T1 International and it’s the film directorial debut of Anthony Rapp, the original Mark in RENT and current star of Star Trek: Discovery.
https://playbill.com/article/watch-anthony-rapp-directed-short-film-type-1
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This is where in the past I’ve talked about what’s coming up next week on the show.. well now we have two shows! In the news will appear in both DC1 and DC2 feeds.. but the weekly interview shows will only occasionally cross over. I’ll try this and see how it goes – next week on DC 1 – Dr. Mike Natter – he’s an adult endo who lives with type 1, he’s also an artist and has a huge following on social media. We’ll find out why – he’s also used the new Beta Bionics iLet pump and lets us know what he thinks about that. Next up for DC 2 – professional golfer Ken Duke talks about his diagnosis and how he manages diabetes on tour.
Join us again soon!